Glennon Magazine Spring/Summer 2021

Glennon S S M H ealth C ardinal G lennon Children’s Foundation

glennon.org

Getting Their Groove On page 20

Spring/Summer 2021, Volume 40, Number 1

VIEWPOINT

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ear Friends of SSM Health Cardinal Glennon Children’s Hospital, As Archbishop of St. Louis, I am honored to

serve as Chairman of the Board for this wonderful institution. The more I learn about the history and legacy of this hospital, I am all the more inspired by how closely that legacy and the mission of exceptional care are intertwined.

What has impressed me most is that despite the immense challenges that the last year has brought us, SSM Health Cardinal Glennon has not only risen to those challenges, but overcome them with grace, creativity and skill.

In this issue of Glennon magazine, you will learn about some of the ways this amazing hospital has flourished thanks to the generosity of the St. Louis community.

With your help, 2020 was a year of growth and new opportunities for many of the exceptional programs that make SSM Health Cardinal Glennon a familycentered place of healing.

All children are precious gifts from God and deserve the very best that we can give them. With your support and the devotion of the caregivers at SSM Health Cardinal Glennon, miracles are happening every day.

Thank you for the honor of being part of this very special mission.

Sincerely yours in Christ,

Most Reverend Mitchell T. Rozanski Archbishop of St. Louis Chairman of the Board of Governors

Contents

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40 14

38 18

FEATURES

14 18 20 24 28 32

36

Sleep Medicine Sound Sleep

Glennon Glow Benefiting Inpatient and Outpatient Cancer Services

Dance Therapy Getting Their Groove On

Telemedicine Bringing Virtual Care to Patients Far Away

Homers for Health Kennedy is Back!

Care for Caregivers Creating an Empathetic Work Environment

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40 44 48 50

Glennon Sunday Where Faith and Healing Unite

Heart & Soul Benefiting The Dorothy & Larry Dallas Heart Center

Hemophilia

32

DEPARTMENTS 4

AROUND GLENNON

8

GLENNON AROUND THE CORNER

Find Out the Latest News

Our Impact Grows

12

CORPORATE CORNER

Mid-America Transplant Services

Not Stopping Life!

54

GLENNON AMBASSADORS

Surgery Excellence

58

ASK THE EXPERTS

60

GLENNON GUILD

62

DEVELOPMENT BOARD

64

EMERITUS BOARD

65

GLENNON FRIENDS

Cardinal Glennon Receives Level 1 Verification from ACS

Children’s Miracle Network Meet Our 2021 Ambassadors

At a Crossroads Transforming the Vision of Health Care for Kids

ON THE COVER: Gabby Smith engages in dance/movement therapy

71

How to Stay Connected

Children and Sleep

Women’s Auxiliary

Young Professionals

Retired from Active Service

Supporting Cardinal Glennon Kids!

WHERE ARE THEY NOW?

Michael Burke

glennon.org Spring/Summer 2021 • 1

Glennon Volume 40 Number 1 Published semiannually by SSM Health Cardinal Glennon Children’s Foundation

Dear Friends of SSM Health Cardinal Glennon Children’s Hospital, Over the past year, our community and our world have been challenged on all sides, but when I look

BOARD OF GOVERNORS Most Reverend Mitchell T. Rozanski Chairman of the Board

around me every day, I see one thing that is not in short supply: hope. The ancient Roman philosopher Pliny the Elder is quoted as saying,

James G. Koman President of the Board

“Hope is the pillar that holds up the world.”

Chrissy L. Nardini First Vice President

As we continue to recover from the events of the last year,

David L. Taiclet, Sr. Second Vice President

I see that hope in a variety of forms: in every act of kindness and generosity toward our patients and families and in

Molly N. Cline Secretary

the healing hands of every caregiver at SSM Health

James F. Whalen Chair, Finance Committee

Cardinal Glennon.

John A. Schreiber Chair, Investment Sub-Committee

This issue of Glennon magazine is full of hope. You will learn

Sandra S. Koller Chief Philanthropy Officer

about some of the hospital’s supportive programs that bring smiles to the faces of children and parents alike, as well as

Steven E. Burghart Hospital President

some of our clinical achievements that give hope to children

Douglas P. Long Assistant Secretary Margaret B. Barrett Brian C. Behrens Tony Berg Galen D. Bingham Andrew P. Blassie Cheryl C. Boushka James G. Brennan Clayton C. Brown Anthony J. Caleca Joseph Caro Matthew L. Carr Sharon A. Cliffe Susan R. Conrad William M. Corrigan, Jr. Robert Q. Costas John R. Costello Timothy J. Danis Daniel L. Dierdorf John F. Eilermann, Jr. Douglas R. Fabick Jeremy Fotheringham Mark J. Fronmuller Reverend Monsignor Vernon E. Gardin Dennis G. Gipson Kristin J. Guehlstorf Shawn Hagan Sherlyn Hailstone John F. Hefele John F. Herber, Jr. Thomas E. Hilton Nicole Holland-Hong Leslee Holliday Dennis J. Jacknewitz

who may have had a very poor outcome in the past. We Lawrence P. Keeley, Jr. Craig E. LaBarge James B. Lally John D. Lee Robert G. Leonard Deborah Marshall W. Dudley McCarter Thomas P. McMillin Dennis M. O’Connor, MD Christopher R. Pronger Douglas A. Ries John S. Ross, Jr. Sister Mary Jean Ryan, FSM Shermini Saini, MD Molly M. Sansone Christopher A. Smith Steven R. Smoot Daniel J. Sullivan Kelvin J. Taylor, Sr. Linda K. Tracy Greg J. Twardowski Sumit Verma Raymond T. Wagner, Jr. Kevin L. Williams John F. Eilermann, III President, Development Board Michael Gilliam Chairman, Knights of Columbus Board of Visitors Brigette B. McMillin President, Glennon Guild

To share a grateful patient experience, a donor story or a volunteer effort, please contact Todd Wise, Director of Marketing and Events, at 314-577-5605 or todd.wise@ssmhealth.com.

have also featured our newly-expanded Care for Caregivers program, which has become a vital part of the SSM Health Cardinal Glennon culture and brings much relief and hope to the caregiving staff at the hospital.

It is because of the generous support of our friends, donors and partners in the community that SSM Health Cardinal Glennon is stronger than ever. I extend my sincerest thanks to all of you who have not only contributed financially to the hospital’s mission but have also covered us and the families we serve in prayer.

With heartfelt gratitude,

Sandy Koller Chief Philanthropy Officer SSM Health Cardinal Glennon Children’s Foundation

Kirby (KJ) Frost

THEN

I

n 2019, we brought you the story of Kirby (KJ) Frost. Walking the halls of the inpatient HematologyOncology Unit on 4 North at SSM Health Cardinal Glennon Children’s Hospital, one will NOW typically see children from infancy through their late teens. But in 2019, those halls were also home to 27-year-old KJ Frost. KJ’s career as a lineman with the IBEW (International Brotherhood of Electrical Workers) took him from his original home in Missouri throughout the United States and as far as California. It was not unusual for him to be working 12-14 hour days.

In early spring 2019, KJ began experiencing a considerable amount of ankle pain. The pain increased over the next few months, so much so that it forced KJ to quit his job and come back to Missouri. A CT scan and MRI revealed a tumor in his ankle, and he was referred to see David Greenberg, MD, an orthopedic surgeon at SSM Health Cardinal Glennon and a member of the SLUCare Physician Group. Dr. Greenberg suspected that KJ had osteosarcoma, a type of bone cancer.

Because osteosarcoma is a cancer that typically occurs in children, KJ was referred to a comprehensive cancer center to begin a pediatric

osteosarcoma treatment protocol. Prompt surgical amputation followed by chemotherapy was his best chance for long-term survival.

On June 25, 2019, KJ had surgical amputation of his leg below the knee just six days after his biopsy. The next nine months would be focused on continued physical rehabilitation and maintaining remission through chemotherapy.

UPDATE KJ celebrated his last chemotherapy treatment on February 22, 2020, just before the COVID-19 pandemic hit locally. One year later, at his most recent visit to The Costas Center in February 2021, his scans showed no signs of cancer. Since his last treatments, KJ gained strength back through hard work on the 80-acre farm that he shares with his wife, Kelly, in New Haven, Mo. When he was first fitted for his prosthetic in October 2019, KJ recalls only being able to use it or stand with it for approximately 30-60 minutes per day. Just 10 months later, KJ was able to return to his career as a lineman working seven 16-hour days per week on assignment in New York. He worked in California for four months at the end of 2020 and is now back in St. Louis, Mo., contracting with Ameren through IBEW Local 2. KJ says, “It’s great to be back home and be around family. When I’m not working, I enjoy tuna fishing with my dad and doing work around the farm. I definitely don’t think I’m held back in any way, and I’m looking forward to the rest of what life has in store.”

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Fire Truck O’ Toys 10 Years Strong!

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s a small child, Kenzie was diagnosed with a degenerative bone disease called Legg-Calves Perthes. During her time receiving treatment at both SSM Health Cardinal Glennon Children’s Hospital and St. Louis Children’s Hospital, she noticed kids and families missing out on some of the joys of the holiday season as a result of being in the hospital. In 2011, Kenzie and her family decided to start Fire Truck O’ Toys, a local non-profit that collects toys and donations for hospitalized children.

Over the years, Fire Truck O’ Toys has grown into a special part of the holiday season at SSM Health Cardinal Glennon. Each year, Santa rides in on a vintage fire truck and spends time passing out toys to patients and families in front of the big Christmas tree in the hospital atrium. Often, he is joined by special friends like Louie from the St. Louis Blues. The Fire Truck O’ Toys team

has impacted countless families and has helped make the holidays even brighter.

Unfortunately, the COVID-19 pandemic put a damper on the holiday festivities, but that didn’t stop Fire Truck O’ Toys from spreading holiday cheer. The team managed to collect and deliver an entire truckload of toys to the hospital ahead of the holiday season, helping ensure that our patients and families could celebrate the season despite the unusual circumstances of 2020.

We are grateful to Kenzie, her family and Fire Truck O’ Toys for their decade of support to SSM Health Cardinal Glennon.

Their generosity and compassion have brought countless smiles to the faces of children in need, and we can’t wait to see Santa and his firetruck visit our hospital again soon.

Santa, Kenzie (center) and Fire Truck O’ Toys visit to SSM Health Cardinal Glennon in December 2019

Benefit Roast for Cardinal Glennon Kids

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irst Crack Coffee has partnered with SSM Health Cardinal Glennon Children’s Hospital to produce the Cardinal Glennon Benefit Roast. The coffee is a medium roast with notes of citrus, cocoa and sweet aroma. Available in both whole bean and ground, the coffee is locally roasted and distributed. Patrons can purchase a bag online or at local grocery stores like Straubs, Schnucks, Dierbergs and even in the gift shop at SSM Health Cardinal Glennon! A portion of each bag sold benefits the hospital.

The team at First Crack is dedicated to giving back to the communities they serve. They hope to continue the Benefit Roast program as long as possible. There is even talk of changing up the recipe in the future! Be sure to check the coffee aisle next time you go grocery shopping!

The Cardinal Glennon Benefit Roast produced

by First Crack Coffee

Steven Burghart, President of SSM Health Cardinal Glennon enjoys his new morning blend

4 • SSM Health Cardinal Glennon Children’s Foundation

FIND OUT THE LATEST NEWS

/ AROUND GLENNON

SendAFriend — Thor

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ince 2019, Thor the facility dog has been a superhero to the patients at SSM Health Cardinal Glennon Children’s Hospital. Now, thanks to a local company, his story is being shared around the country... one stuffed animal at a time.

SendAFriend is based in Jackson, Mo., and enables customers to send a plush friend to loved ones.. Part of their mission includes donating 10% of their total monthly sales to various children’s hospitals and in April 2020, they donated more than $30,000 to SSM Health Cardinal Glennon. However, after that initial donation, they had an idea. What if they created a stuffed version of the most popular four-legged employee at SSM Health Cardinal Glennon?

In November, Thor’s doppelganger was ready for its big debut, and it came with some extra exciting news. SendAFriend announced that not only would 10% of all Thor sales be donated back to SSM Health Cardinal Glennon, but for each one sold, a plush Thor will be donated to the hospital to be handed out to patients. More than 1,000 Thor stuffed animals have already been donated, allowing Thor and the Child Life Team to provide patients with a special memento from their time working together.

We are so grateful to SendAFriend for their support of our patients and look forward to continuing this special partnership.

Want to send a Thor to someone special? Visit sendafriend.co to learn more.

Glennon Kid Addilyn with plush Thor

Thankful Threads

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hankful Threads launched earlier this year as a way to creatively engage the SSM Health Cardinal Glennon Children’s Hospital community while giving back to the hospital. Alivia and Ryan Kraft, grateful parents and owners of the boutique Laree and Co., dreamed up the concept in honor of their daughter, Lilian. Born with Trisomy 18, an extra

chromosome resulting in developmental abnormalities, Lilian has undergone several surgeries at SSM Health Cardinal Glennon and is a regular patient adored by staff.

Thankful Threads is a celebration of t-shirt design submissions from anyone with a personal connection to SSM Health Cardinal Glennon. Five final t-shirt designs are voted on via Cardinal Glennon’s Facebook page and the shirt design that receives the most votes is made available for purchase!

Alivia and her family handle the printing and online fulfillment of the shirt orders, with a portion of the proceeds going back to the hospital to help other kids at SSM Health Cardinal Glennon.

Our first winning design comes all the way from the Philippines!

Sixteen-year-old Andrei’s connection to SSM Health Cardinal Glennon is his grandmother, our very own Oly

Datu, who works as a concierge in the Same Day Surgery waiting room.

Oly moved from the Philippines to the United States in 2013. Her two children, nine grandchildren and three greatgrandchildren remain in the Philippines, including the very talented Andrei.

You could be our next winner!

Submit your design online for the next Thankful Threads t-shirt before June 18, 2021, at glennon.org/thankful-threads.

Andrei, creator of the winning design

Oly Datu, Andrel’s grandmother and Glennon employee

glennon.org Spring/Summer 2021 • 5

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Sodexo Hosted Employee Raffle Fundraiser

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hen people walk through the doors of SSM Health Cardinal Glennon Children’s Hospital, they see the love and compassion our caregivers display for our patients as well as each other. This year, Sodexo, the food service partner of SSM Health Cardinal Glennon, hosted an employee raffle fundraiser to benefit the Children’s Fund, which supports the areas of greatest need within our own hospital. The fundraiser included 36 department-created, themed baskets, a 65” Smart TV donated by our friends at Tech Electronics, a raffle for a prime parking spot and the ability to purchase a ‘Jeans Card.’

Additionally, employees volunteered for onehour shifts during the three-week raffle-selling period. The special fundraiser raised more than $8,000 for the Children’s Fund. Thank you so much to our friends, both inside our hospital walls and out, for always going above and beyond to support us!

Kim Eighmey and Aimee Riethmeier join the many Glennon employees who volunteered to sell raffle tickets

Cardinal Glennon patient Gabby draws the winning ticket for a Smart TV donated by Tech Electronics

Celebrities Giving Back St. Louis Cardinal and Homers for Health Co-Chair Matt Carpenter (1, 2) as well as St. Louis native Andy Cohen (3, 4) screened in to say hello to patients and families.

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2

3

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6 • SSM Health Cardinal Glennon Children’s Foundation

FIND OUT THE LATEST NEWS

Cardinal Glennon gets National Exposure!

UPDATE

Spring/Summer 2020 Issue

S

SM Health Cardinal Glennon Children’s Hospital got national recognition thanks to the daytime talk show, The Tamron Hall Show! Tamron had a special show in December honoring and surprising health care workers, along with a few very special Cardinal Glennon patients! The show aired across the country and was a great opportunity to show the amazing work happening at our hospital.

The two patients featured on the show, Barry and Zendaiya, were able to chat directly with Tamron on her show and Tamron was overwhelmed by their strength and courage. Since they would be staying in the hospital over Christmas, Tamron decided to brighten their holidays by giving each patient some of the season’s hottest toys!

Tamron didn’t stop Tamron Hall Show there — she collected over $20,000 worth of toys from a variety of toy companies and had them all delivered to our hospital to be given to patients through the year.

Scan the QR Code to watch our special coverage on the Tamron Hall Show.

/ AROUND GLENNON

Anna Breen with son Casey

Casey today

Since Spring of 2020, when we featured Mighty Casey and the GIRAF team at SSM Health Cardinal Glennon, Casey and his family have moved back to Alabama to be closer to family. Casey’s mom, Anna Breen, says, “It has helped out tremendously, although I still miss Glennon! I have been to a lot of children’s hospitals by now and just have to say that Glennon truly is a special place.” Casey’s specialist at SSM Health Cardinal Glennon, Dr. Nisha Mangalat, referred Casey and his family to Dr. Galloway at Children’s of Alabama. Mrs. Breen has maintained some contact with her GIRAF team here and hopes to visit St. Louis and her Glennon team when the COVID-19 pandemic is no longer a concern. Casey still receives IV feedings, but is weaning off slowly. He is off two nights a week and they are hoping to take off even more soon.

Mrs. Breen comments, “He is a happy, bright and curious little boy now and enjoys being spoiled rotten by his grandparents here in Alabama!”

2021 UPCOMING EVENTS Join us at one of our many annual events or programs. Please visit glennon.org for more details!

Glennon Sunday

Presented in partnership with Columbia Golf Club

Wine, Dine and Divots | A White Hot Affair

A 30 Year Tradition

Saturday, September 13 G ATES

Dierdorf Pronger Golf Classic October 11, 2021

OPEN AT

3:00 P . M . | K RÄFTIG P OLO C LUB

Glennon Gallop September 18, 2021

E SAV VE

SA0%

220%

Glennon Card Glennon Card

SunRun October 10, 2021

2021

Glennon Golf Classic September 10, 2021

October 15-24

Glennon Sunday June 6, 2021

Glennon Card October 15-24, 2021

Giving Tuesday Hospital Holiday Lighting November 30, 2021

glennon.org Spring/Summer 2021 • 7

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AL N I RD A C

GLEN NON SSM Health Cardinal Glennon Safety Program Launches Safe Send-Off Project

Glennon Around the Corner:

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hanks to generous funding from State Farm®, SSM Health Cardinal Glennon Children’s Hospital has 14 new Certified Child Passenger Safety Technicians (CPSTs)!

A CPST can be a nurse, social worker, therapist, paramedic, patient care tech or other provider, but they all have one thing in common: a passion for keeping kids safe!

us make that happen,” says Kim Fanter, BSN, RN, CPSTI. The CPST course consists of three days of classroom learning, followed by a half-day skills demonstration at one of our local car seat safety-check events. CPSTs can be a vital part of the hospital discharge process, especially when caring for a family with limited financial resources.

“Our main goal is for kids to leave the hospital safer than when they arrive. We are extremely grateful to have the support of donors who help us make that happen...”

“Our main goal is for kids to leave the hospital safer than when they arrive. We are extremely grateful to have the support of donors who help

Generous funding from community partners enables us to provide a car seat at no cost to families who need one. What may seem like a simple thing

significantly impacts the future health and safety of our precious patients.

In 2021, Safe Send-Off will expand to include a second cohort of learners, recruited from within SSM Health Cardinal Glennon, as well as our Specialty Services sites in North County and South County. Renewed support from State Farm has allowed us to leverage additional funding to train up to 25 additional CPSTs! “State Farm values the importance of keeping our neighbors safe,” says Dave Oloffson, Corporate Responsibility Analyst with State Farm. “We are honored to continue our relationship with SSM Health Cardinal Glennon to ensure the safety of the children of St. Louis.”

Josh Dugal, Kim Fanter and Cassandra Witte of SSM Health Cardinal Glennon, with Dane Huxel, State Farm Agent

8 • SSM Health Cardinal Glennon Children’s Foundation

TREE OF HOPE

Faith,

Glennon Kid

A record year for Tree of Hope!

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e remain so grateful and overwhelmed by our community’s support of our hospital through opportunities like Tree of Hope.

Despite the challenges our city and region continue to face, the commitment and dedication of the caregivers at SSM Health Cardinal Glennon Children’s Hospital have not wavered, and your commitment to them and the children we serve is much appreciated.

Our Tree of Hope end of year giving campaign makes a huge difference for so many, but most importantly, the patients we serve.

And that’s because

of you. You stepped up when we needed you most and we are in awe of your passion for our hospital.

A major factor in this past year’s Tree of Hope success was the partnership with our friends at Entercom radio and their ‘Week of Hope.’ Each St. Louis Entercom radio station — 102.5 KEZK, 96.3 R&B for The Lou, 97.1 FM Talk, Hot 104.1, KMOX NewsRadio 1120 and Y98 — committed to one hour of programming each day for an entire week dedicated to SSM Health Cardinal Glennon.

During this hour patient families and special guests called in to share why SSM Health Cardinal Glennon means so much to so many. A special moment happened on The Charlie Brennan Show when his guest Zsolt Rumy called in with a challenge. Not just any challenge, but a $50,000 matching gift

challenge! He said if the listeners could raise this amount on their own, he would match it — and the listeners came through!

The community’s support of the Tree of Hope end of year giving campaign enables us to continue providing the very best health care to all children, regardless of their family’s ability to pay. Through your giving, you are helping us uphold our Mission: “Through our exceptional health care services, we reveal the healing presence of God.”

P R E S E N T E D BY:

glennon.org Spring/Summer 2021 • 9

AROUND GLENNON /

THE TIES THAT BIND

MOTHER AND DAUGHTER

Michelle Hawk and Chelsea Hawk Michelle Hawk, MBA, MSN, APRN, NNP-BC, NEA-BC, CMPE, Director of Advanced Practice

THE TIES THAT BIND: Glennon Family Raising the Next Generation of Glennon Family However you may define it, the word “family” is powerful.

These are people that surround you with care, concern and love.

These are the people who see you, who understand what you are going through and through it all, they stand by your side loving you through life.

Many caregivers who walk the halls of SSM Health Cardinal Glennon Children’s Hospital consider 1465 S. Grand their home and the people in it their family.There are people who have made Cardinal Glennon their home for decades. There are people whose parents worked there, whose children work there, whose spouses work there, and so on. None of that is by accident. The family ties are numerous. It’s a result of that indescribable “Glennon Factor,” and with any luck, will only keep perpetuating.

Over the next several magazine issues, we would like to introduce you to a few SSM Health Cardinal Glennon family members who started out as biological family – but now share Cardinal Glennon as their second family home.

WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I have worked at

Glennon since 1984, and have had at least 7 different roles throughout my career here.

I was a staff nurse, assistant head nurse, a neonatal nurse practitioner and the team leader for neonatal nurse practitioners – all in the NICU. Between 2011 and 2019, I managed surgery, orthopedic, pulmonary, neurosurgery and Hem-Onc advanced practice providers, was team leader for nursing operations and was the director of the ambulatory care center and ambulatory specialty care. Since 2019, I’ve worked as the director of advanced practice. We are building an Advanced Practice Center of Excellence here, and I have the opportunity to guide practice and processes for Advanced Practice at Glennon,” says Michelle.

WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “I knew I wanted to

work with children. The people here are part of my family. We have extraordinarily ill children, desperate families and possibilities for improved health for these children. We are able to accomplish extraordinary things on behalf of the children and their families by working and out-thinking our challenges.

We do that every day here at Glennon as a team, and that is what inspires me,” says Michelle.

WHAT IS THE BEST PART ABOUT YOUR JOB?

“I love the resiliency of the patients, families and employees. I treasure the people I work alongside,” says Michelle.

Chelsea Hawk, MBA, Administrative Assistant, Medical Staff Office WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I have been with

SSM Health Cardinal Glennon for 8 years now. I worked as a unit secretary, a unit assistant, and in 2016, I became the

MOTHER AND DAUGHTER

Barb Kountzman and Emily Burlison Barb Kountzman RN, Clinical Nurse, Division of Cardiothoracic Surgery WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “My 40-year

anniversary is in July this year! I started my career in the Pediatric Intensive Care Unit. Throughout my years there, I was a bedside nurse, a charge nurse, an assistant head nurse and the ECMO coordinator.

I also worked with the PICU intensivists coordinating and assisting with rounds,

10 • SSM Health Cardinal Glennon Children’s Foundation

Chelsea Hawk (left) and Michelle Hawk

administrative assistant to the chief medical officer and the medical staff office. In the early part of the pandemic, I spent six weeks starting up and “managing” Cardinal Glennon’s Telehealth program, and in November of 2020, I began supporting the director of strategy and business development as well,” says Chelsea.

WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “I have always had

a sense of pride for this place—probably based on the fact that I knew my mom was here saving lives. Once I got my own job here, I began to see firsthand what this place does for the community and how we care for our patients,” says Chelsea.

WHAT IS THE BEST PART ABOUT YOUR JOB?

“I know that what I do matters. I make sure our doctors have what they need to be a part of our staff, assure they have access to our patients during unprecedented times, and give our CMO the time and space to find new ways to provide the best possible patient care and support for our community.

That matters,” says Chelsea.

ON WORKING AT GLENNON TOGETHER

Michelle comments, “It is fun to be able to go down the hall and run into your daughter at work.” Chelsea adds, “When people say hello to me in an elevator, I have to figure out if they know me from when I was growing up, from what I do now, or both,” she laughs. procedures and research studies. For the last 25 plus years, I have worked as the cardiovascular clinical nurse. I’m responsible for preoperative and postoperative teaching, scheduling clinic and scheduling surgical cases. I’m the liaison between any departments involved in the care for all the cardiothoracic surgery patients, and I’m the point person for the families.

WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “In nursing school, I

had a job as a nurses’ aide on the telemetry floor at St. Anthony’s Hospital. I loved my old people! It wasn’t until I did my pediatric rotation my senior year that my

THE TIES THAT BIND

WHAT IS THE BEST PART ABOUT YOUR JOB? “The best thing about my job is

interest turned to pediatrics. I was hired

by Cardinal Glennon before I graduated from nursing school. I fell in love and have stayed in love with this place,” says Barb.

definitely the patients and my coworkers.

The resilience of our patients and their families amazes me. My coworkers are fantastic, and we spend a lot of time with one another, both at work and outside of work. We laugh and cry with one another — over work and personal matters. I truly love them like family and would do anything for any of them,” Emily says.

WHAT IS THE BEST PART ABOUT YOUR JOB?

“I meet many of our families before their babies are even born. Parents go from being devastated and scared to being outstanding advocates for their child. It is a gift to work with such an incredible group of people within my own team as well as all the other services who help care for our patients,” says Barb.

Emily Burlison, RN, BSN, Discharge Coordinator/New Patient Educator, Hematology/Oncology WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I have worked at

SSM Health Cardinal Glennon since 2009.

I started on 3 South as a clinical partner in 2009, and then became a staff nurse on 4 North. In 2014, I became the neuro oncology nurse coordinator, and then in 2019, I became the discharge coordinator/ new patient educator for the hematology/ oncology team,” says Emily.

MOTHER AND DAUGHTERS

Judy Cowell, Alison Cowell and Madeline Cowell Judy Cowell RN, BSN, Manager, Neonatal/Pediatric and Maternal Fetal Medicine Access Center WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I started in the

Neonatal Intensive Care Unit 31 years ago as a student nurse. Following graduation, I became a staff nurse in the NICU. From 1992 to 2020, I was a nurse and CSN (clinical support nurse) on the transport team, and in 2020, I became the manager of the neonatal/pediatric access center. I oversee the intake process for all patients coming to Cardinal Glennon from outside hospitals, physician’s offices and urgent care clinics. We also facilitate all transfers, consults, non-birthing hospital consults and the maternal transport team for SSM Health St. Mary’s Hospital,” says Judy.

WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “My mother

and grandmother were both nurses, and my mom actually worked at Cardinal Glennon in the late 1950s! I loved hearing her stories growing up, and I always remember wanting to be a pediatric nurse. I worked both at Barnes and Cardinal Glennon as a student.

Cardinal Glennon felt like family, which is why I ended up choosing to work here as a nurse. I have never regretted it,” Judy says.

WHAT IS THE BEST PART ABOUT YOUR JOB?

“I am so proud of our access center, and excited to expand our role to help ensure our patients and families are getting excellent care from the very beginning,” says Judy.

/ AROUND GLENNON

ON WORKING AT GLENNON TOGETHER

Barb Kountzman (left) and Emily Burlison WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “When I was

in kindergarten, I had to draw what I wanted to be when I grew up. I said I wanted to work at Cardinal Glennon and be a nurse like my mom. I went to nursing school, but it wasn’t until my pediatric rotation that the calling really clicked into place. When it was time to find a job I couldn’t think of working anywhere but Glennon,” Emily says.

Barb comments, “I have received numerous compliments about Emily from her families and coworkers. She is a hard-working, kind and compassionate advocate for her patients in addition to raising two beautiful, strong-willed spirited daughters of her own.” Emily laughs and states, “I didn’t think I was anything like my mom. It wasn’t until I was driving to work one day and saw the lipstick on my coffee cup that I realized I had become my mother! Seriously, though, she inspired me so much then and she continues to inspire me now!”

Alison Cowell, BSN, RN, Pediatrics, Critical Care, NICU WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I will celebrate my

5 year anniversary at SSM Health Cardinal Glennon in June. I started as student nurse intern in the neonatal intensive care unit, transitioned to unit secretary in the NICU, and then became a staff NICU RN after graduation,” says Alison.

WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “I always loved

hearing my mom talk about her job. I thought it was so awesome that she helped take care of kids, just like us, but when they were very sick. She taught me how to swaddle my baby dolls so I could practice taking care of babies. I’ve been a patient in the clinics and had some tests done as a kid and have just always loved this hospital,” Alison says.

WHAT IS THE BEST PART ABOUT YOUR JOB?

Typically at the beginning of a NICU stay, there aren’t many ways for parents to participate with the baby’s care. It’s great to help them experience ‘firsts’ like changing their first diaper, taking a temperature or simply just touching their baby through the portholes of the isolette,” says Alison.

Madeline Cowell, BSN, RN, Pediatrics, Hematology/Oncology WHAT’S YOUR HISTORY AND ROLE WITH CARDINAL GLENNON? “I’ve worked for

a year and a half as a hematology/ oncology staff nurse on 4 North,” says Madeline.

(Left to right) Alison Cowell, Judith Cowell and Madeline Cowell WHAT WAS YOUR INSPIRATION TO WORK AT CARDINAL GLENNON? “My mom, Judy

Cowell, works here and my grandmother, Sharon Malpiedi, did as well! I love to work with pediatric oncology patients and am inspired by their strength,” says Madeline.

WHAT IS THE BEST PART ABOUT YOUR JOB?

“My job allows me to be part of families’ journeys through cancer. It is a privilege to witness their strength and grace, help them cope and be a sense of comfort for them,” says Madeline.

ON WORKING AT GLENNON TOGETHER

Judy comments, “I am just so proud to say that both of my daughters work at Cardinal Glennon.” Madeline adds, “I love ending my night shifts by meeting my sister and visiting with our mom before heading home. Sometimes we’ll eat breakfast together, and it’s so great to be able to do that.”

glennon.org Spring/Summer 2021 • 11

CORPORATE CORNER

Wall of Remembrance at Mid-America Transplant Foundation

Mid-America Transplant joins Cardinal Glennon to research ICU stresses

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“

hether it’s a planned surgery or an unexpected condition, having a child in the intensive care unit is every mom and dad’s worst nightmare.

It takes a psychological toll,” said Benjamin Rooney, MA. Caring for those patients and families also is difficult for the unit’s staff. “There’s a saying, ‘A parent’s worst day here is the staff’s every day,’” said Rooney, a psychologist conducting research at SSM Health Cardinal Glennon Children’s Hospital.

Mid-America Transplant Foundation is funding the research project, titled the CRISIS Group (Critical Incident Stress and Investigation). It is studying the effects and support mechanisms for families and caregivers encountering stress in critical care settings.

Little research guides providers in adopting coping mechanisms for patients and themselves, said

Jason Werner, MD, a SLUCare critical care pediatrician in the hospital’s pediatric intensive care unit (PICU) and co-principal investigator of the project.

“There are some very sick children in the PICU,” he said.

“Even if your child is not one of them, you see kids who are at immediate risk of their life from one moment to the next.”

About half of parents will develop acute stress disorder during their child’s PICU hospitalization and about one-quarter of them will exhibit symptoms of post-traumatic stress disorder (PTSD). “That is about the same rate of PTSD that is seen in combat veterans,” Werner said.

Stress disorders “change their ability to get along in their family and at work,” he said. “PTSD is the body and mind’s response to chronically being activated, worried and concerned. They are hyper-vigilant

12 • SSM Health Cardinal Glennon Children’s Foundation

Kevin Lee, Executive Director of the Mid-America Transplant Foundation

Nicole Kellen, Director of Community Engagement, Mid-America Transplant Foundation

even when that vigilance is no longer needed.”

The foundation is the charitable arm of Mid-America Transplant, a federally-designated regional coordinator for organ and tissue procurement and donation.

“Mid-America supports programs and partnerships that save and heal lives,” said Kevin Lee, Executive Director of the Mid-America Transplant Foundation.

Its motto — “Inspired by Life” — reflects the belief that patients and families benefit from support during and after acute incidents.

CRISIS Group merges the missions of SSM Health Cardinal Glennon and Mid-America, he said. “How do we provide services to support and lift up not only the patient but the family and care providers?”

INTENSIVE STRESS Stress disorders may impair family relationships and leave the parents fearful of returning to the hospital. “It affects their ability to seek follow-up care,” said Lauren Draper, MD, a SLUCare pediatric hematologist-oncologist and palliative care physician at SSM Health Cardinal Glennon and co-principal investigator of the CRISIS Group.

Werner listed the goals of CRISIS Group’s goals as supporting families and studying factors related to vulnerability to stress disorders, including the resilience to withstand the stresses.

THE CARE TEAM The CRISIS Group also studies stress reactions in caregivers, Werner said. “Constant exposure to stress, traumatic events and tragedy is not something that even professionals can sail through unscathed.”

The research team will publish its findings and recommendations in medical journals to assist other intensivists. “I hope we are able to transform the way we provide support for staff and families,” Draper said.

MID-AMERICA TRANSPLANT Mid-America Transplant, founded in 1974, coordinates organ and tissue donation for 84 counties in eastern Missouri, southern Illinois and northeastern Arkansas. It is one of 58 transplant organizations designated by the federal government.

Heart transplant recipient Luke Ryker with family

In 2020 the organization facilitated transplants of 815 organs, 908 corneas and 181,000 skin, bone, tendon and heart valve tissues.

“The frontline staff at the hospital are trained to do everything in their power to heal, but there is not a lot in their education that talks about supporting families,” said Nicole Kellen, Mid-America’s Director of Community Engagement.

Grief is experienced by the families of transplant recipients as well as those of donors, she said.

“Before transplant, they feel stress while waiting for the call about an organ, never knowing if the call is going to come. After transplant they feel guilt, knowing that another family experienced tragedy so their child could live.

hospital while awaiting transplant and recovering from surgery.

The Mid-America Transplant Foundation funds patient support groups and clinical research of methods to improve the viability of donated organs.

“We are very proud to partner with Cardinal Glennon on this project because it addresses a much-needed resource,” Kellen said.

“The Mid-America Foundation has a very strong commitment to the community,” Werner said.

The CRISIS research “is energizing for us because we can combine our passions of saving and healing lives,” Lee said. “We love Cardinal Glennon’s commitment to serving families regardless of their ability to pay. They serve families

“The Mid-America Foundation has a very strong commitment to the community.”

“We are able to follow our families for a minimum of two years.

We have families who have remained in our program for the 15 years that I have been here,” Kellen said.

Mid-America provides long-term support for donor and transplant families who are patients at four transplant centers in St. Louis. It partners with six grief centers and operates an apartment building so that families can live near their

across Missouri and southern Illinois, which is part of the area we serve,” Lee said.

“We take a lot of pride in the work that is being done at Cardinal Glennon and our small role in that. The unsung heroes in intensive care are nurses and parents. We want to make sure we are supporting the staff who support the families who support the patients.” glennon.org Spring/Summer 2021 • 13

Sound Sleep

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ith his arms full of colorful dinosaurs, 6-year-old Jack Griswold is well-rested and ready to go off on an adventure and play. The Kirkwood first-grader is decked out in a dinosaur shirt and socks and is eager to show off an ever-growing collection of dinosaurs in his home.

“I like dinosaurs a lot,” he said excitedly as he drags a three-foottall dinosaur down the hall.

His mother, Heather Griswold, laughs as she watches her son. “We have definitely seen that he’s more active and his mood has improved since he’s been getting more sleep and consistent oxygen when he breathes,” she said.

Jack is one of the thousands of children who come to the Pediatric Sleep and Research Center at SSM Health Cardinal Glennon Children’s Hospital each year for a sleep study. The Sleep Center is one of only four pediatric centers in Missouri accredited by the American Academy of Sleep Medicine.

“We’re busy and running seven days a week all year round, except for major holidays,” said Brent Haberman, MD, SLUCare physician and Medical Director of the Sleep Center. “The number of sleep studies has tripled over the past several years. In 2020, even with

Jack Griswold, Glennon Kid

COVID restrictions, we conducted more than 2,200 sleep studies.”

Jack came to the Sleep Center after an annual wellness exam with his pediatrician, Janette Powers, MD. “She looked in his mouth and told us there was no space in Jack’s throat because his tonsils were so big; in fact, they were so large, they were touching each other in Jack’s throat,” said Mrs. Griswold.

It was then that Mrs. Griswold and her husband, Mike, started thinking about Jack’s sleep habits.

“He would wake up in the middle of the night quite often,” recalled Mr. Griswold. “But the biggest thing we noticed was that Jack snored very loudly.”

Almost 70 percent of children aged ten and under in the United States have some type of sleep problem.

The doctor recommended that the family see an ear, nose and throat specialist and consider surgery to remove Jack’s tonsils.

Wanting to make a more informed

The Griswold family (left to right): Violet, Mike, Jack, Heather and Grace glennon.org Spring/Summer 2021 • 15

SOUND SLEEP

Sleep technicians Phillip Johnson RPSGT (left) and Scott Funke RPSGT (right) scoring a polysomnogram

Jack Griswold, Glennon Kid

decision before deciding upon surgery, the Griswolds were referred to SSM Health Cardinal Glennon’s Sleep Center for an evaluation.

“We didn’t know kids could get a sleep study,” said Mr. Griswold.

“But the hospital made it very comfortable and easy to do.”

Last fall, Jack and his dad drove to SSM Health Cardinal Glennon to spend the night. With COVID-19 precautions in place, the two wore masks and were assigned to one of seven private bedrooms in the Sleep Center. Jack would sleep in

SLUCARE SLEEP MEDICINE SPECIALISTS Brent Haberman, MD Rocio Zeballos-Chavez, MD Julie Sahrmann, DO H. Tom Johnson, MD Angela Orlando, APRN

the bed; his dad on the sleeper sofa.

As luck — or fate — would have it, Jack’s favorite thing appeared on the television while they were going through the admissions process.

“They had (the movie) Jurassic Park on TV!” Jack said with delight. “I got to watch the dinosaurs while they hooked me up with wires and stuff.” Added Mr. Griswold, “When I saw that come on the television, I thought to myself, this is going to work, and he’ll be fine with the study. And he was!”

Jack’s wires were connected to equipment that monitored his breathing patterns and oxygen levels while he slept. After he and his dad went back home the next morning, sleep technicians began reviewing the extensive report. “We get a recording of the entire night’s sleep, broken down into 30-second intervals,” explained Dr. Haberman.

“Each report is about 1,200 pages long and synced to a video of the child sleeping through the night.

The technicians then evaluate and score each page to determine if there is a sleep problem or disorder.”

A NATIONAL SLEEP PROBLEM Almost 70 percent of children aged ten and under in the United

16 • SSM Health Cardinal Glennon Children’s Foundation

Brent Haberman, MD

States have some type of sleep problem. The eye-opening statistic was just one finding from the first-ever pediatric sleep survey conducted in 2004 by the National Sleep Foundation. Researchers also found that sleep problems can occur as often as two or more times a week from infancy through the teen years. In younger children (infant to age five), more than 30 percent of children wake up in the middle of the night and 25 percent were sleepy as a result during the day.

Parents awakened by their children in the wee hours take 30 minutes or longer to fall back asleep. If you have a newborn or

AT A GLANCE The Pediatric Sleep and Research Center at SSM Health Cardinal Glennon Children’s Hospital •A ccredited by the American Academy of Sleep Medicine • 4 board-certified pediatric sleep specialists • 20 sleep technicians • Rapid referrals for sleep studies available for infants to children age 21 • Appointments 7 days a week (except major holidays) • Weekend appointments also available at SSM Health St. Joseph Hospital – St. Charles, Mo. • Ranks above the national average in sleep study scoring accuracy • Consistently high patient satisfaction • Participant in sleep clinical trials

infant, that amounts to a loss in excess of 200 hours of sleep during your child’s first year.

While some sleep problems are common and can be resolved with established routines and the elimination of caffeine and electronic devices at night (SEE PAGE 58), other issues can be more severe. Serious sleep problems include: Insomnia – Chronic difficulty in falling asleep or remaining asleep Obstructive Sleep Apnea – Blocked airways that result in snoring and pauses in breathing during sleep Narcolepsy – Chronic daytime sleepiness Restless Leg Syndrome – A movement disorder that causes a person to twitch or involuntarily move their legs, making it difficult to fall asleep or stay asleep

The American Academy of Pediatrics recommends that every child be screened for snoring as part of a regular health exam. In children ages three to five, tonsils should also be checked because enlarged tonsils are among the most common reasons a child may have obstructive sleep apnea.

Dr. Haberman, a SLUCare pulmonologist board certified in pediatrics, pediatric pulmonology and sleep medicine, leads a team of four board-certified pulmonologists/sleep medicine specialists and 20 certified sleep technicians. The multi-disciplinary team includes neurologists, otolaryngologists, psychiatrists, psychologists and urologists. In addition to the seven-bed Sleep Lab and clinic at SSM Health Cardinal Glennon, there is a two-bed pediatric sleep unit that the team oversees at SSM Health St. Joseph Hospital in St. Charles, Mo. Additionally, two outpatient sleep clinics are located in north and south St. Louis County to evaluate and follow patients.

A GOOD NIGHT’S SLEEP After reviewing the comprehensive sleep study, Dr. Haberman diagnosed Jack with obstructive sleep apnea due to enlarged tonsils that blocked much of his airway. Jack underwent surgery at SSM Health Cardinal Glennon to remove his tonsils last October. “The good news,” said Dr. Haberman, “is that 85 percent of children who have their tonsils removed, as Jack did, will no longer have sleep apnea.”

Since Jack’s surgery, Mrs. Griswold noted, “He’s been sleeping so much better and doesn’t snore at all. His mood has improved and he’s not as tired during the day.”

“Post-surgery, his reading has accelerated too, and I think all of that is the result of Jack getting enough sleep,” said Mr. Griswold.

Glennon Kid Jack and his sisters playing with his favorite dinosaurs

glennon.org Spring/Summer 2021 • 17

GLENNON GLOW TONIGHT 2020 – VIRTUAL EDITION

Bob Costas

Ozzie Smith

GLENNON

GLOW TONIGH T

Adam Wainwright

Glennon Glow Tonight – Virtual Edition Benefiting inpatient and outpatient cancer services at SSM Health Cardinal Glennon

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ike most other fundraising galas in 2020, Glennon Glow shifted to a virtual landscape on November 20, 2020. The evening offered a chance to recognize community service with the prestigious Glennon Award, while also recognizing the dedication and service of hospital staff members that provide inspiration daily to our patients and families looking for hope and healing.

Instead of walking into a themed-ballroom at The Ritz-Carlton St. Louis, supporters received a fully-cooked three-course meal from Butler’s Pantry on their doorstep along with a basket showcasing the mission of The Costas Center at SSM Health Cardinal Glennon

Children’s Hospital. The basket included a video box with statistics around pediatric cancer diagnoses and treatment costs to show our donors the impact of their support.

Later that evening, donors enjoyed their meal in the comfort and intimacy of their own home and then tuned-in to the virtual program.

Anne Allred, KSDK news anchor, returned to emcee the evening and was surprised when comedian and magician Justin Willman popped in with a few tricks of his own. Justin performed at Glennon Glow in 2016 and 2017 and could not resist the chance to entertain the many great supporters of SSM Health Cardinal Glennon once again.

18 • SSM Health Cardinal Glennon Children’s Foundation

A tradition at Glennon Glow, the Glennon Award recognizes an outstanding recipient for their part in contributing to the health and welfare of children in our community.

Along with his wife Barbara Hilton, Event Co-Chair and Board of Governors member Thomas Hilton was honored to present the 2020 Glennon Award to Archbishop Emeritus Robert Carlson, who served as the Foundation’s Chairman of the Board of Governors during his 11 years as Archbishop of St. Louis.

P R E S E N T E D BY:

Hilton shared the true partner Archbishop Emeritus Carlson was to the hospital through our mission.

Hilton said, “He shared our sense that mission drives every procedure undertaken, every healing decision made and every patient interaction.”

Archbishop Emeritus Carlson felt the staff at SSM Health Cardinal Glennon personify the mission and recognized that their tireless dedication goes beyond

Justin Willman

board member, champion of children, avid supporter of our hospital’s mission and friend tous all.”

Joining Hilton in congratulating Archbishop Emeritus Carlson was Laura Kaiser, President and CEO of SSM Health, Archbishop Mitchell Rozanski, Archbishop of St. Louis and Chairman of the Board of Governors, and Timothy Dolan, Cardinal Archbishop of New York and a proud and grateful St. Louisan.

Anne Allred

The Poettker Family (from L to R): Glennon patient Maren, Neely (mom), Mercer (sister) and Chris (dad)

health care to human care. He believed that the mission of SSM Health Cardinal Glennon was an important aspect of the greater mission and work of the Archdiocese of St. Louis. Hilton shared many ways to describe Archbishop Emeritus Carlson, “…a priest, faithful shepherd of the Archdiocese of St. Louis, dedicated chairman of the Board of SSM Health Cardinal Glennon Children’s Foundation, engaged and interested

Archbishop Emeritus Carlson humbly accepted the Glennon Award and remarked on the incredible place that is SSM Health Cardinal Glennon. “I think it’s one of the best things that St. Louis has to offer,” he shared. Continuing with “The hand of God is present in the incredible work which is accomplished there. You stop to think about it, every five days a child is diagnosed with cancer. What a tremendous challenge for the

parents and yet Cardinal Glennon comes in and helps out in such a beautiful way.”

Supporters were then introduced to Maren, a Cardinal Glennon kid, to hear firsthand about the exceptional care provided in the Costas Center and on the 4 North inpatient unit for cancer services.

Maren’s journey at SSM Health Cardinal Glennon began in October 2019 when she was 2 years old and started complaining of neck pain.

A biopsy showed it was more than just a swollen lymph node; it was stage four cancer — neuroblastoma.

Maren’s journey still continues at SSM Health Cardinal Glennon today and she is just one example of the many children undergoing treatment at The Costas Center.

After hearing such a heartfelt story, Anne introduced Board of Governors member Bob Costas who reminisced about his early involvement with SSM Health Cardinal Glennon in the late 1980s and the great honor it has been for him to support the life-changing work being done at the hospital. Bob then introduced fellow baseball Hall of Famer Ozzie Smith and current St. Louis Cardinals pitcher Adam Wainwright for an engaging panel discussion to close out the evening.

The panel discussion covered topics including their own ties to SSM Health Cardinal Glennon and of course, baseball. The three went on to discuss memories with some of baseball’s greatest — Lou Brock and Bob Gipson — as well as on-and-off field memories and future plans.

Finally, we’d like to wish a heartfelt thank you to Centene Charitable Foundation, who has generously served as Glennon Glow’s presenting sponsor for the last five years. Your investment in The Costas Center has inspired many other sponsors and donors and brings great hope to the children and families bravely fighting childhood cancer.

glennon.org Spring/Summer 2021 • 19

GETTING THEIR GROOVE ON Dance therapist helps patients build positive coping skills and resiliency through dance and movement

Do not be fooled by the halo-gravity traction walker to which 11-year-old Gabrielle (Gabby) Smith is tethered.

Or the 26-pound weight attached to the walker that is gently stretching and straightening Gabby’s severely curved spine.

She’s got moves like Jagger.

As soon as registered dance/ movement therapist, Joanna Pirnat, hits the play button on her iPad in the hospital room that has been Gabby’s home for the past six weeks, Gabby’s shoulders shimmy, her hips sway and her hands sweep overhead with a rainbow ribbon.

She bobs her head and sings along to “Faith,” an energetic gospel tune by Stevie Wonder and Ariana Grande.

She is lost in the music, not the medical equipment that surrounds her. The last thing on her mind is DiGeorge syndrome, a chromosomal disorder that has wreaked havoc on her heart and bones and has caused her to be hospitalized more than a dozen times since birth.

Gabby’s mother, Anjanette Davis, watches from the corner of the room. The smile under her surgical mask is hidden but can be

seen in her eyes. A few weeks ago, her daughter could not get out of bed because she was too sore and too depressed.

“I didn’t even let Gabby look at herself in the mirror because she would start to cry,” said Ms. Davis of Florissant, Mo. “With the halo and weights, we were scared about her dancing and moving around, but once Gabby picked out her favorite music, she wanted to get out of bed. She was motivated. She started moving more, laughing more. Just look at her. She’s so happy. She can’t wait for Joanna’s visits.”

MADE-TO-ORDER MOVEMENT Pirnat is the first full-time dance/movement therapist (DMT) to join the Child Life Services team at SSM Health Cardinal Glennon Children’s Hospital. The team had a part-time DMT for several years,

Joanna Pirnat, R-DMT, in session with Glennon Kid Gabby and her mom, Anjanette Davis glennon.org Spring/Summer 2021 • 21

GETTING THEIR GROOVE ON DANCE THERAPY

Joanna Pirnat, R-DMT

The position established in 2020 was made possible by support from three nonprofit partners – Spread Ari’s Light Foundation, Drea’s Dream, and the Arts and Education Council – and makes dance/ movement therapy an integral part of the patient recovery experience.

makes dance/movement therapy an integral part of the patient recovery experience.

Dance/Movement Therapy helps patients improve self-esteem and body image, develop effective communication skills, expand their movement and learn ways to cope with the stress and uncertainty of illness, trauma, injury and loss.

“I use dance and movement to connect a child’s internal experience to external expression,” Pirnat said. “Some children need to jump up and down and roll on the floor to express themselves. Others may not need such a high level of activity.”

“I tailor my therapy to each patient. If a child is having a particularly rough day or underwent surgery, for example, our session might involve just sitting together doing breathing exercises. We might go on a pretend journey and imagine movement. No matter how small the movement, I show them they are capable.”

NOT JUST FOR KIDS It is not difficult to find Pirnat in the hospital. She walks down hallways pulling a cart filled with brightly colored ribbon wands, scarves, pool noodles and hula hoops – a sort of traveling circus.

She receives consults from nearly all units in the hospital. Her youngest

patient was four months old. Her oldest was 19.

With parents of infants, Pirnat’s sessions tend to be attachmentfocused. She teaches parents different holding and rocking patterns to comfort their babies.

Sometimes, she uses scarves or sensory balls that babies might be able to hold or manipulate themselves.

“It engages the parents and helps them elicit positive reactions from their child,” she said. “It’s special to be there when they see their babies smile for the first time in days or weeks.”

Even staff have been known to join Pirnat’s sessions.

She recalls one late Friday afternoon walking by the room of a 6-year-old boy on the hematology/ oncology floor. This boy was known to have a lot of energy and nowhere to go with it. She asked him whether he wanted a session, and he headed straight for her hula hoops. Before long, the patient was challenging staff to a hula hoop contest that drew in nurses, physicians and social workers.

“He was surrounded by 20 people cheering him on,” she said.

“It was such an amazing experience for him and the staff, coming together to do something so enjoyable.”

“I tailor my therapy to each patient.

No matter how small the movement, I show them they are capable.”

but as more patients requested access to the therapy and evidence mounted as to its effectiveness, it became clear a full-time position was warranted.

The position established in 2020 was made possible by support from three nonprofit partners – Spread Ari’s Light Foundation, Drea’s Dream and the Arts and Education Council – and 22 • SSM Health Cardinal Glennon Children’s Foundation

Joanna Pirnat, R-DMT

“Patients who just received a diagnosis and are unsure of what their future holds might have powerful feelings they need to get out,” said Pirnat.

“I let them punch balloons, throw soft toys, kick and scream because it’s a safe way to release their frustration.”

LET YOUR FEET DO THE TALKING Pirnat is a trained dancer who learned early that dance is a way she could express herself and tell other people what she is experiencing.

“Movement can be used in place of words and that’s the great thing about dance/movement therapy,” she said. “It’s non-verbal. It taps into a child’s natural capacity for rhythm and movement, which is perfect for younger children who don’t have the vocabulary to express their needs or wants.”

On an average day, Pirnat visits seven patients. Anger, frustration and loss of control top the feelings chart for the children she sees.

“Patients who just received a diagnosis and are unsure of what their future holds might have powerful feelings they need to get out,” said Pirnat. “I let them punch balloons, throw soft toys, kick and scream because it’s a safe way to release their frustration.”

Joanna Pirnat, R-DMT, with Glennon Kid Gabby and her mom, Anjanette Davis

TAKING THE LEAD SSM Health Cardinal Glennon is one of only a few hospitals in the country with a full-time dance/movement therapist whose focus goes beyond oncology and behavioral health units. Pirnat’s supervisor, Kimberly Eighmey, manager of Child Life Services, said Pirnat is not only helping her patients, but she also is helping build the foundation for this emerging field.

“We are trendsetters,” Eighmey said. “We are incredibly fortunate to have a foundation and donors that allowed us to grow our program so quickly and provide our patients with this unique approach to coping and healing. We anticipate other hospitals will be looking to our program as they implement theirs.”

People are already looking.

Pirnat often is shadowed by interns, nurses and physicians interested in seeing her therapy in action.

Universities in and out of state have contacted her about internship opportunities. Pirnat created and implemented standardized protocols for initial psychomotor assessments for patients to track both their physical and psychological/emotional progress through treatment.

Gabby’s orthopaedic surgeon, Pooria Salari, MD, a

SLUCare orthopaedic surgeon and an assistant professor in the Department of Orthopaedic Surgery, Division of Spinal Deformity and Reconstructive Spine Surgery at Saint Louis University School of Medicine, is impressed by Gabby’s progress.

“Because of her complex pathology, Gabby’s treatment is quite complex,” Dr. Salari said. “She will require long-term halo-gravity traction on an inpatient basis, which limits her activity to walking and standing with a walker. With the new dance therapy program, she has been doing more and more and having a lot of fun doing it. It’s just another great thing that Child Life Services is doing to make Gabby feel good during this lengthy process.”

At this moment, Pirnat is wrapping up her hour-long session with Gabby, who is popping bubbles and singing “I Just Can’t Wait to be King.” Both Gabby and Pirnat have broken a sweat.

Gabby sings in her church choir and wants to be a television star. She also wants Pirnat to be her sister.

“I love Joanna so much. She makes me happy.”

Ms. Davis beams.

“Gabby has come so far in so little time; everybody is amazed,” said Ms. Davis. “I can’t wait to watch Gabby grow up and do great things.” glennon.org Spring/Summer 2021 • 23

Steven Laffey, MD, a SLUCare pediatric emergency medicine physician, consults with a rural ER via computer

Telemedicine brings virtual care to patients far away

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ediatric specialists at SSM Health Cardinal Glennon Children’s Hospital had long sought to provide virtual care through laptop computers, tablets and smart phones. Their patients live across a broad swath of the Midwest and often drive hours to attend appointments.

Early in 2020, the COVID-19 pandemic made telemedicine

more than convenient — it became absolutely necessary.

“We needed to shift on a dime, knowing that we were not going to be able to safely see patients in person except for those with the highest, most critical care needs,” said Shawn Dryden, Vice President of Ambulatory Services at SSM Health Cardinal Glennon.

“Within two weeks we had a

24 • SSM Health Cardinal Glennon Children’s Foundation

telehealth platform up,” he said.

“Every specialty was determining which patients were appropriate to be seen via telehealth. We did more than 16,000 outpatient telehealth visits in 2020. In the past it would have been less than a thousand.”

“Our patients come from all over Missouri and Illinois. A lot of them are under-resourced with specialty care in their communities and face significant travel burdens,” said Gary Albers, MD, a pediatric pulmonologist, Executive Director of Ambulatory Care and a SLUCare physician at the hospital.

The burdens include the cost of gasoline, the time taken from work,

childcare for the patient’s siblings and navigating a large, unfamiliar city.

One virtual visit was made for 3-week-old Everlee Kestler when something worrisome appeared on her toes. Her pediatrician referred her to SSM Health Cardinal Glennon.

Everlee lives 45 minutes away in Godfrey, Ill., and in addition to the pandemic, there was snow on the ground.

Everlee’s mom, Danielle Kestler, decided to schedule a telemedicine appointment with Elaine Siegfried, MD, Director of Pediatric Dermatology and a SLUCare physician.

“It was nice to stay home and warm and get the same thing accomplished.”

“Her skin lesions were unusual and suggestive of a potentially life-altering genetic condition,” Dr. Siegfried said.

“We sent pictures of Everlee’s feet through my phone,” Mrs. Kestler said. “Dr. Siegfried said it fortunately was something minor and very manageable. I didn’t want to drive over there with a newborn baby when the weather was hit or miss, so it was nice to stay home and warm and get the same thing accomplished.”

INTO THE 21ST CENTURY SSM Health Cardinal Glennon already conducted a telemedicine Shawn Dryden, Vice President of Ambulatory Services

Gary Albers, MD, Executive Director of Ambulatory Care

network for regional community hospitals. With funding for equipment purchases from external grants and donors to SSM Health Cardinal Glennon Children’s Foundation, the hospital began sharing the expertise of its maternal-fetal medicine specialists as early as 2012. The service expanded over the years to include neonatal and emergency medicine.

One of the services offered at these 17 community hospitals is Tele-ER. “One of the more common ways we use telemedicine is for basic consults. We provide a second opinion and reassure the family.

Elaine Siegfried, MD, Director of Pediatric Dermatology and a SLUCare physician, examines a patient through images sent to her computer

glennon.org Spring/Summer 2021 • 25

TELEMEDICINE BRINGS VIRTUAL CARE TO PATIENTS FAR AWAY We may avoid a transfer that might save several hours of travel time and extra money for the family,” said Steven Laffey, MD, a SLUCare pediatric emergency medicine physician. “When a child is very sick or has a traumatic injury and is coming to our emergency room, we can help manage the patient while they wait for transport.”

Some partnering hospitals are equipped with telemedicine robots — six-foot-tall rolling carts carrying a high-definition monitor, microphone, speaker and camera that can pan, tilt and zoom to enlarge images up to 12 times.

The camera is controlled remotely by the consulting physician. Stethoscopes, ultrasound probes and other instruments can be connected to the robot.

SSM Health physicians can consult through computers at their hospitals, homes or portable

telephones. The remote staff sees the physician’s face on their video screen as if the two teams are working side by side.

“The quality is awesome,” said Dr. Laffey. “I can look at the patient and the patient’s monitor and take a close look at rashes or other lesions.”

FAMILIAR FACES Neonatologists at SSM Health Cardinal Glennon are consulted by community hospitals several times weekly and occasionally several times daily, said Ayoob Ali, MD, MPH, MBA, MSHI, CPE, CHCQM, FAAP, Director of Tele-NICU and a SLUCare physician.

“Our most important services are neonatal resuscitation and stabilization. If a baby is delivered in respiratory distress they want us to have a look. Community hospitals don’t have a high volume of babies

who need to be resuscitated,” he said. “Sometimes those babies will be okay and will be able to stay in that hospital close to their family.”

Some babies will need to be referred to the Dana Brown Neonatal Intensive Care Unit at SSM Health Cardinal Glennon.

“While our transport team is on the way, we help to stabilize the baby and assist with intubation and IV line access. If there is a pneumothorax we help them place a chest tube,” Dr. Ali said.

The neonatologist stays online as long as needed. If the transport team is delayed, such as when bad weather grounds its helicopter, “I will stay with them as long as a couple of hours,” Dr. Ali said. “Most of the time we are seeing the same staff. As time goes by they become familiar to us.”

CONVENIENCE AND SAFETY Staying close to home is more than a convenience for women with high-risk pregnancies, said Gil Gross, MD, a SLUCare maternal-fetal medicine specialist. “You don’t want patients with a high-risk pregnancy on the road for four to six hours.”

Through Tele-MFM (maternalfetal medicine), physicians in St. Louis can handle about 90 percent of the care needed by these patients at other hospitals, he said.

Nurses and ultrasound technicians at partner hospitals are trained to perform the same standard examinations conducted in St. Louis.

Tele-MFM care includes pre-conception and genetic counseling, diabetes education and management, ultrasound examinations and antenatal testing for fetal health, Dr. Gross said. “About the only thing we cannot do is physically examine the patient, but maternal-fetal medicine does not typically rely on that. There really is no negative for telemedicine.”

Linked through a telemedicine robot, the staff at HSHS St. Joseph’s Hospital in Breese, Ill., examines an infant with guidance from Ayoob Ali, MD, Director of Tele-NICU and a SLUCare physician

26 • SSM Health Cardinal Glennon Children’s Foundation

THE PANDEMIC ARRIVES Direct virtual patient visits were becoming technically feasible through personal smart phones and tablets. But a hurdle remained — insurance reimbursements to allow telemedicine providers to remain financially viable.

“I have been pursuing mechanisms to provide teledermatology and have been doing informal telemedicine for at least a decade,” Dr. Siegfried said. “I quantified it a couple of years ago — I was doing maybe 100 consults a month from my desk via text messages, phone calls and email. None of that was reimbursed.”

When COVID-19 forced health care to be delivered remotely when possible, insurance payers, led by the federal government, temporarily authorized telemedicine reimbursements.

“At the height of the pandemic about 60 percent of our ambulatory encounters were made by telehealth,” said Matt Wheeler, Ambulatory Director of Operations and Telehealth. “Since then, we have gotten to a stable factor of roughly 15 percent of our encounters.”

QUALITY OF CARE “The key to maintaining the quality of care of telemedicine is patient selection by the clinical team,” Dryden said. “Each division identifies the appropriate patients they can see over telehealth and offer their standard level of care.”

In-person visits are still scheduled when physical examinations, treatments, lab tests or vaccinations are needed. “We had protocols in place that enabled us to safely see patients in person,” Dryden said.

Physicians have found that telemedicine is suited for Matt Wheeler, Ambulatory Director of Operations and Telehealth

Gil Gross, MD, a SLUCare maternal-fetal medicine specialist, remotely studies a prenatal ultrasound exam

services such as psychology, psychiatry and developmental pediatrics and management of chronic diseases such as eczema, asthma, allergies and sleep dysfunction.

LIMITATIONS “I serve on the teledermatology task force of the Society for Pediatric Dermatology,” said Dr. Siegfried. “Recently they sent out a survey that found the top issues that were problematic with delivering telehealth care are poor image quality, poor connectivity and lack of rapport with patients.”

Some patients live in areas with poor cellular service. Others do not have cellular devices with image capability or are not adept in using them.

Technology costs prevent smaller rural hospitals from acquiring sophisticated telemedicine equipment, said Dr. Ali. He is working on a platform that will be less expensive and extend immediate specialized care to more rural providers and patients.

FUTURE OF CARE Administrators and physicians are exploring means of expanding virtual care through community telehealth hubs, Dryden said.

“They might be at a hospital or a primary care pediatrician’s office.

The patient could arrive in a clinic setting and have hands-on support as part of the evaluation.”

Advances in rural wireless service and personal device technology could allow more care to be delivered directly to patient homes. In the near future, sensors and monitors may be connected to family phones, Wheeler said. “For a kid who is managing something like blood pressure or diabetes, there could be the ability to track that virtually.”

The future of telemedicine will depend upon insurance providers, Wheeler said. “Will their actuaries find that patient outcomes are the same or different?”

While the quality of care likely remains unchanged for patients who had diligently kept in-person appointments, telemedicine could be improving outcomes for patients who live far away or have other problems in maintaining their care schedules, Wheeler explained.

With telemedicine, Dryden said, “The quality of care hasn’t dropped.

If we can provide the same level of service while patients and families stay in their home communities, there is long-term added value in that. Telemedicine will continue to play a significant role.” glennon.org Spring/Summer 2021 • 27

HOMERS FOR HEALTH 2021

Team Fredbird energizes fans during a 2019 St. Louis Cardinals game

Homers for Health 2021 Kennedy is Back!

L

ast year, we introduced you to Kennedy, SSM Health Cardinal Glennon patient and Homers for Health Co-Chair.

As you know, the 2020 baseball season did not turn out as planned.

Our entire world changed, and everyone encountered unexpected challenges.

Kennedy knows all too well what it’s like to overcome tough challenges. At age 5, she was diagnosed with kidney disease and underwent weekly treatments while she awaited a new kidney.

In 2019 at age 10, Kennedy received the gift of life through a kidney transplant at SSM Health Cardinal Glennon. Miracles like Kennedy’s would not be possible without the dedicated community

28 • SSM Health Cardinal Glennon Children’s Foundation

of people who support Homers for Health.

This year, Kennedy is back as Homers for Health Co-Chair as the program celebrates its 10th year!

10 Years of Impact Since 2012, Homers for Health has touched the lives of countless patients and families at SSM Health Cardinal Glennon. Here’s a look at some of the ways you have made a difference.

P R E S E N T E D BY:

Kennedy, Glennon Patient

2021 Homers for Health Co-Chair

PLEDGE FOR PATIENTS glennon.org PRESENTED BY:

glennon.org Spring/Summer 2021 • 29

HOMERS FOR HEALTH 2021

T H E IMPACT O F YO U R S U PPO RT

2012

NOW

Maggie, now a junior at Lindenwood University, recalls the hospital’s outdoor playground being built and how it was a great distraction on long treatment days when she spent three years battling T-cell leukemia. “I still come yearly and love seeing all the new things made possible because of you and I am forever grateful!”

2019

NOW

Luke just celebrated his 11th

birthday on February 25 and finished his treatment for acute lymphoblastic leukemia in September 2020. He is currently in the 5th grade and enjoys getting to play basketball with his brothers and volleyball on his school’s team.

Luke has been learning in-person since August and is excited to cheer on the Cardinals this season!

Imaging Center Homers for Health helped support a large-scale update to the SSM Health Cardinal Glennon Imaging Center in 2013. Home to some of the most advanced diagnostic imaging in the region, children of all ages receive the safest care from highly-skilled caregivers using the latest technology.

Pediatric Intensive Care Unit Located in the oldest part of the hospital structure, the Pediatric Intensive Care Unit (PICU) is where some of the sickest patients receive expert, round-the-clock care. The PICU features 18 large patient rooms, specifically-designed for patients of varying ages and needs, including two expanded rooms where surgical interventions can be done at the bedside. The PICU was remodeled and updated in 2014 thanks to the community’s support of Homers for Health.

The Costas Center Since 1996, The Costas Center has offered convenient, accessible care for families of children battling cancer. This outpatient center features exam rooms, a playroom, infusion suites and treatment rooms.

In 2014, The Costas Center was refreshed and renovated, making it a more comfortable, welcoming environment.

4 North In 2018, hospital staff and donors gathered to

30 • SSM Health Cardinal Glennon Children’s Foundation

cut the ribbon on the newlyrenovated Inpatient Cancer Unit at SSM Health Cardinal Glennon.

Commonly referred to as “4 North,” this unit features 18 expanded patient rooms with sleeper sofas for families, a multi-purpose room, a playroom and a four-bed Bone Marrow Transplant Unit.

Program Expansions Donations to Homers for Health have also helped support expansions of some of the hospital’s key supportive programs: •S pecial Needs Tracking and Awareness Response System (STARS) •C hild Life Services •F ootprints Palliative Care •M usic Therapy •H ealthy First Weight Management Program The miracles that happen at SSM Health Cardinal Glennon are about more than just welcoming spaces. It’s in the skilled hands that heal, the kindness of an encouraging word and the way in which every child and family is treated with compassion and respect. Thousands of lives have been touched by the generosity of our supporters. Thank you and here’s to the next 10 years!

THANK YOU TO OUR SPONSORS

PRESENTED BY:

glennon.org Spring/Summer 2021 • 31

the

care for caregivers program

Kasey Wayman, CCLS (Certified Child Life Specialist), enjoys some relaxation time in the traveling zen room massage chair

32 • SSM Health Cardinal Glennon Children’s Foundation

C

T reating and sustaining an empathetic

work environment for our staff is a priority.

In health care, many caregivers experience chronic stress and burnout,

o meet this need, SSM Health Cardinal Glennon Children’s Hospital launched the Care for Caregivers (C4C) program in 2013. Through this program, peerto-peer support is offered to help staff process and recover from stressful situations on the job.

mental and emotional toll. Staff may also experience troubling or stressful workrelated events that are emotionally challenging.

Tier 1: Peer-to-peer support, resources and tools readily available from the C4C steering committee to encourage staff to support each other and promote self-care.

Tier 2: A trained peer support network, comprised of more than 75 physicians, nurses and support staff What types of issues who have been trained in crisis support and stress does C4C address? management. In addition, Examples include all department leaders and (but are not limited to): nursing supervisors have been trained to provide • A patient receiving a poor support and to connect prognosis employees with peer • Death of a patient supporters. Staff may • Dealing with an aggressive self-refer for support or or combative parent refer a colleague anonymously.

• Caring for a victim of trauma

or abuse •S taff experiencing increased personal stress

which left untreated can take a physical,

TIERS OF SUPPORT

If staff are experiencing, or they observe a colleague experiencing, a reaction to a stressful event or outcome, a team of trained peer supporters are available to provide “emotional first aid.” Any member of any hospital team may be involved in an unanticipated patient or stressful situation and may be traumatized by that event. C4C provides a safe zone in which staff may receive the support they need to mitigate the impact of traumatic events.

When Care for Caregivers first launched, it was coordinated by two nurses on a volunteer basis, in addition to their regular job responsibilities, who then formed a “steering committee” to brainstorm and provide additional support.

From the program’s inception, there have been three tiers of support forming the core structure of the program.

Tier 3: Intensive support that addresses needs beyond peer support, and includes resources such Pastoral Care, the Employee Assistance Program or a scheduled group debriefing.

To supplement these core elements, the C4C steering committee incorporated additional components through the years, including guided meditation sessions, Caring 4 U events, presentations for staff, bi-annual training for peer supporters, Code Lavender bags (which include treats, goodies, self-care items) and more. And while this pioneering team felt program offerings were adequately meeting needs, it was challenging in a volunteer structure to expand or add additional levels of support. In an ideal world, the program would have an embedded employee — a licensed mental health professional — to lend support and supplement current program offerings.

glennon.org Spring/Summer 2021 • 33

CARE FOR CAREGIVERS PROGRAM

Angie Dockins, MEd, LPC, reads a note from the ‘Take What You Need Board,’ which provides inspirational quotes for staff to take with them

CREATING A CULTURE OF SELF-CARE In October 2020, thanks to generous donations to SSM Health Cardinal Glennon Children’s Foundation, a new position was created to support this peer-topeer work. Angie Dockins, MEd, LPC, joined the staff of SSM Health Cardinal Glennon as the program manager for Care for Caregivers.

“In my previous job, I worked as a clinical supervisor for a behavioral health outpatient clinic working closely with caregivers. I understand and am passionate about the impact of burnout and compassion fatigue,” says Dockins.

In her first few months, Dockins met Angie Dockins, MEd, LPC

with leaders and managers to explore the unique needs of their teams. Her role is designed to provide proactive and reactive support for staff to help with combating fatigue and burnout as well as ensure that caregivers are given the level of support they need while doing their work.

“The sooner we can intervene following a traumatic event, the better,” says Dockins. “As an embedded employee, I can provide immediate support to staff when they need it.” This support may come in a variety of forms, from a simple check-in to a full debrief.

Dockins is also a member of the Employee Wellness Team, who conducted a survey in December 2020 (with a follow-up in March 2021) asking employees how they could be better supported in terms of health and wellness.

Though every patient care unit has a unique culture and needs, Dockins found that a common thread was the challenge of taking

34 • SSM Health Cardinal Glennon Children’s Foundation

advantage of support options if they required leaving the unit during their shift. Staff voiced on their surveys that they would appreciate things like massages, physical wellness activities, mindfulness or meditation practices, therapy and counseling resources, but if any of these required time off the unit, the likelihood of them being utilized was slim.

Nurse Juanita Allmon comments, “We encourage our families to be sure they give attention to their personal self-care, yet it seems like we as members of the health care team tend to neglect our own self-care.

Personally, I have experienced this first hand. I think to myself, ‘I have too much to do, I don’t have time for self-care,’” she says.

As a result of the wellness survey, Dockins has taken steps to bring support to employees “where they live” at the hospital. She advocates for self-care and stress management to be prioritized and

accepted as part of the hospital culture, as routinely emphasized as is patient safety and exceptional clinical care. Dockins sends “selfcare tip of the week” emails to leaders and Tier 2 supporters, which are discussed at daily staff huddles.

She also offers weekly virtual mindfulness/stress reduction sessions, which are available to any staff member. These sessions offer a guided meditation as well as an educational component with varying topics.

BRINGING CALM TO CHAOS Two of the most popular interventions Dockins has added in her first few months have been the Traveling Zen Room experience and individual counseling sessions.

In the workplace, a zen room, or quiet zone, is meant to create peace, tranquility and focus to provide employees an escape and a chance to gain clarity on their work.

Since most areas in the hospital do not have the room to create a full-time space for this purpose, Dockins designed the Traveling Zen Room in January 2021 to provide a temporary and timely individualized custom experience.

A Traveling Zen Room experience can provide a combination of any of the following options, depending on the needs of the unit: a massage

chair, aromatherapy, a sound machine, coloring books, self-care bingo (with prizes), guided meditation and in-person mental health support from a licensed mental health professional. Dockins has also joined forces with Child Life to occasionally offer time with Thor, the hospital’s Facility Dog. The custom experience can be available anywhere from two hours to all day or overnight.

Since January, Dockins has provided a custom Traveling Zen Room experience for ten different departments. One inpatient unit has even requested a recurring experience every other week for their staff. Post-experience surveys reflect the benefits in many ways, and while different staff may verbalize favor of one aspect over another, most agree wholeheartedly

routine of healthy mindfulness and self-care practices. This experience was a baby step in the right direction for me personally and for my team. Since then, our team has started completing a gratitude journal as a group and this has also had positive effects. We are all on a journey of self-care, and we just have to keep it going.”

“It’s exciting to see this being sought after and received well.

Often in health care, caregivers don’t want to be perceived as vulnerable. We have to improve our culture and give each other permission to care for ourselves. I hope the trend continues and that I can continue to add more things,” says Dockins.

Dockins has also had a large increase in Tier 3 referrals this year, specifically for her individual

“Care for Caregivers helps us pause and take time for ourselves.” that it is gratifying to be thought of and offered the respite opportunity.

Allmon described her experience saying, “Care for Caregivers helps us pause and take time for ourselves. The Traveling Zen Room was a welcome escape from the non-stop chaos of my daily routine. It offered me an opportunity to participate in exercises that renewed my spirit and gave me fuel to finish the day with a positive outlook. It really takes time and energy to develop a Angie Dockins, MEd, LPC, reviews a self care bingo card with Kaity Roberts, CCLS

counseling services. “I’ve had five or six calls just in the last week. It’s great to see people reaching out.

Although our sessions are short term, I’m happy to be available as an on-site counseling resource, or help a staff member get connected to an outside therapist through their insurance or EAP. Sometimes navigating those resources can be a little overwhelming, so I’m happy to help guide them through those steps one-on-one,” says Dockins.

“I am grateful for the funding from the Foundation that has given this program the structure and platform to expand. The pandemic forced us all to examine how we can still be ‘present’ with each other, even in the most isolating of circumstances. I look forward to training more peer supporters soon, providing refresher training for our current supporters and gradually adding more events and wellness opportunities house-wide,” says Dockins.

glennon.org Spring/Summer 2021 • 35

Sariah, Glennon Kid

T

hree years ago, Sariah Gettys and her mother, Shamika, were involved in a devastating motor vehicle accident. Upon her arrival at SSM Health Cardinal Glennon Children’s Hospital, doctors discovered that Sariah had sustained severe spinal cord injuries and was unable to breathe on her own.

Even though Sariah requires full support for breathing, feeding, bathing, dressing — she does not let these challenges get her down. Today, she is a spunky second-grader who brings her mother joy every day. “Her smile lights up the room,” Ms. Johnson says. “My focus right now is to make sure Sariah lives her best life while being able to be as ‘normal’ as possible.”

Ms. Johnson credits her faith with helping her through the tough times. “If I didn’t have my faith, this whole experience would be too difficult to navigate…I have to look to God for my wholeness and hope, and I pray every day for Him to keep filling us with positivity and vision.”

Where faith and healing unite Glennon Sunday 2021 Give at

glennonsunday.org/donate SCAN TO GIVE SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue, St. Louis, MO 63110 • 314-577-5605 • 1-800-269-0552

You can be a part of making miracles possible.

Once again, you inspired us.

Let us celebrate you.

Thank you to our annual donors making a difference every day, every year — full circle. Scan this code to learn more and see our list of Glennon Circle members.

Committed to what matters. Devoted to more.

SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue • St. Louis, MO 63110 • 314-577-5605 • 1-800-269-0552 • glennon.org

HEART & SOUL 2021

The virtual Heart & Soul program ended with a special performance

by Dirty Muggs

Watch the Video

Heart & Soul ‘Havana Nights’ Benefiting The Dorothy and Larry Dallas Heart Center

F

or the last five years, the Heart & Soul gala has taken on a fresh look with a new theme for each event. As this year’s event moved from February to April, it took on the bright tropical theme of ‘Havana Nights.’ With COVID-19 still limiting gatherings of any kind, this year’s event was more unique than ever as we went virtual. Supporters were encouraged to celebrate within their own comfort zone.

Whether just with their household or with a small group of friends at a country club, many got creative in their commitment to support The Dallas Heart Center.

Event registrants received party packages which included Cuban-themed food, mojitos and décor items featuring palm leaves, party straws and 3D-printed wine charms. Regardless of the gathering location or size, all tuned in for the virtual program featuring KSDK

news anchor Rene Knott as the emcee, a surprise appearance

by Tim Niemann and a special performance by St. Louis’s own Dirty Muggs!

The virtual program gave donors a glimpse into the miracles happening at The Dorothy & Larry Dallas Heart Center each and every day. On average, the heart center receives more than 5,000 patient visits each year and completes approximately 17,000 outpatient procedures annually. In addition, more than 1,000 procedures have taken place in the region’s first Pediatric Hybrid Cardiac Catheterization Suite, which is located at SSM Health Cardinal Glennon Children’s Hospital, and more than 70 pediatric heart transplants have been performed by this team since the late 1970s. Most notably, the Dallas Heart Center team has been ranked as a Center

38 • SSM Health Cardinal Glennon Children’s Foundation

of Excellence by US News & World Report for eight consecutive years!

Keeley Companies, Jennifer & Jim Koman and Mimi & Greg Twardowski all answered the call to be Presenting Sponsors for Heart & Soul Havana Nights.

The Twardowskis were joined by Kathey & Dave Taiclet as Co-Chairs for this year’s memorable event.

In addition, the Glennon Guild, a women’s auxiliary group made up of over 300 women committed to supporting Cardinal Glennon kids, also joined forces with the Heart & Soul planning committee to help boost awareness and fundraising.

Despite the challenges of switching from a large in-person gala to a virtual event, the support for The Dallas Heart Center at SSM Health Cardinal Glennon was greater this year than any other.

P RESEN TI N G SPON SOR S

Jennifer & Jim Koman

Mimi & Greg Twardowski

R HYTHM SPON SOR

Judy & Jerry Kent PULSE SPON SOR S

Betty & Tom Conley

Shelley & Dave Dressel Family

Kris & John Pantanella

Mary & Joe Stieven

Kathey & Dave Taiclet Family Tom Burke, CEO - Jeff Fiehler, President

glennon.org Spring/Summer 2021 • 39

Glennon Kid Jayson is now able to play with less worry

HEMOPH N O T S TO P P I N G L I F E !

Fo r t h e f i r s t t i m e i n h i s l i f e, J a y s o n J o rd a n i s a b l e t o e n j oy l i f e w i t h o u t wo r r y i n g exc e s s i ve l y a b o u t w h e t h e r h e m i g h t h u r t h i m s e l f a n d d eve l o p a s i g n i f i c a n t b l e e d i n g c o m p l i c a t i o n t h a t w o u l d w a r ra n t a t r i p t o t h e h o s p i t a l .

J a y s o n , a n 1 1 - y e a r - o l d l i v i n g i n F l o r i s s a n t , M o. h a s h e m o p h i l i a , a ra re g e n e t i c d i s o rd e r t h a t p re ve n t s a p e r s o n ’ s b l o o d f ro m c l o t t i n g e f f e c t i ve l y.

40 • SSM Health Cardinal Glennon Children’s Foundation

H

owever, thanks to a new medication under investigation in clinical trials at SSM Health Cardinal Glennon Children’s Hospital and other sites across the country, Jayson has not had a bleeding problem in more than two years.

“We heard about the clinical trials for the drug while at a national hemophilia meeting,” said Jayson’s mother, Jade Burrell.

“When we got back to St. Louis, we asked about it and were able to get into the clinical trial. Jayson got on the medication and guess what? No bleeds. It has been amazing.”

The medication, called HEMLIBRA®, can be given as an injection every one to two weeks. It is now approved by the U.S. Food & Drug Administration for the treatment of hemophilia A in children and adults. “We’ve switched the majority of the kids we see with hemophilia A to this medication,” said SLUCare

Glennon Kid Jayson Jordan (center) with his parents, Alfred Jordan and Jade Burrell (left), and grandmother Paris Harris (right)

Hemophilia is an inherited bleeding disorder that occurs when there is little to no presence of a type of protein in the blood called a clotting factor. There are two

HILIA hematologist John Puetz, MD, Medical Director of the John Bouhasin Center for Children with Bleeding Disorders at SSM Health Cardinal Glennon. “All are doing quite well. It doesn’t completely eliminate bleeding episodes, but they are markedly less.”

John Puetz, MD, Medical Director of the John Bouhasin Center for Children with Bleeding Disorders at SSM Health Cardinal Glennon

common types: hemophilia A and hemophilia B, designated by which clotting factor protein is missing.

The disease affects mostly men, but women can be carriers and pass the condition to their children. The primary symptoms are excessive bleeding, deep bruising, frequent nosebleeds, blood in the urine or stool and pain or swelling of the joints.

“Children with hemophilia don’t necessarily bleed faster than other children, but it takes longer to stop,” said Dr. Puetz. “If a child without hemophilia gets a cut, for example, it may stop in five minutes,

but in children with bleeding disorders, it could take all day or longer for the bleeding to stop.

They can even bleed internally from a bruise or fall, which can damage joints and muscles.”

The Bouhasin Center at SSM Health Cardinal Glennon is one of 141 federally-designated Comprehensive Hemophilia Treatment Centers (CHTCs) in the United States. It is the oldest federally-designated pediatric hemophilia center in the region.

According to the Centers for Disease Control and Prevention (CDC), individuals who receive treatment at such a center were 40 percent less likely to be hospitalized for bleeding complications due to the multidisciplinary expertise of the treatment team.

In 2020, results of a survey conducted by researchers from the CDC and those in the CHTCs found that there are an estimated 33,000 males living with hemophilia in the United States. In two-thirds of all cases, there is a family history of the disease. For Jayson, his grandfather had the disease and his mother passed along the abnormal gene when Jayson was born.

glennon.org Spring/Summer 2021 • 41

HEMOPHILIA — NOT STOPPING LIFE!

SSM Health Cardinal Glennon’s hemophilia treatment team (L to R): John Puetz, MD, Pam Miller, PT, Christopher Hugge, MD, and Lydia Johnson, RN

“His grandfather, Leon, actually was treated at Cardinal Glennon until he was in his 30s,” said Jayson’s grandmother, Paris Harris.

“For him, bleeds were regular and if he lay down too long, he would get a bleed that affected his joints. He

SLUCare hematologists Dr. John Puetz and Dr. Christopher Hugge both care for patients with rare blood disorders such as hemophilia and Von Willebrand Disease.

even had bleeding in his brain and passed away in 1990 due to complications from treating his disease.”

Jayson was tested at the hospital soon after he was born in 2009. “We were supposed to get him circumcised, but I knew I was probably a carrier of the hemophilia gene, so we got him tested,” said Mrs. Burrell. “It was positive. We delayed the circumcision until Jayson was a year old.”

Jayson had a bad bleeding incident later that first year, resulting in a three-day hospitalization. And in elementary school, he recalled another bad time. “I was playing kickball at school and got a bad bruise,” Jayson said. “I told everyone I was hurt, but it didn’t look bad to them and I walked home from school that day.” The bruise, however, led to significant internal bleeding. He was out of school for three months.

Treating hemophilia requires infusions or injections of the missing clotting factor. While the

42 • SSM Health Cardinal Glennon Children’s Foundation

disease can’t be cured, it can be effectively treated, with children learning how to give themselves the medications. “The goal is to convert severe cases to moderate or even mild cases with the drugs available today,” explained Dr. Puetz, “We are aggressive with early treatment because some patients with severe hemophilia can develop arthritis from damaged joints and be in a wheelchair by the time they reach their 30s.”

On average, the Bouhasin Center sees more than 150 patients each year diagnosed with a bleeding disorder. It regularly follows more than 100 children diagnosed with hemophilia. The team’s expertise is apparent in the results. National quality metrics related to patient compliance with medications to prevent bleeds and attendance at annual clinic visits is 93 percent, significantly higher than the national average of 66 percent.

“We’re very diligent in contacting our patients and following up with any issues,” said Dr. Puetz. “Because of that, we also have high patient satisfaction rates, too.”

VON WILLEBRAND DISEASE While hemophilia affects primarily boys, another rare inherited bleeding disorder affects mostly girls. Called Von Willebrand Disease (VWD), it also is the result of a missing or deficient protein that helps the blood to clot.

“What are the odds that with a 50 percent chance of passing along the gene to a child, all three of my children would inherit the disease,” said Peggy Carson of Granite City, Ill. “My sister and I both have Von Willebrands.”

VWD is most often diagnosed during puberty, when heavy menstrual bleeding warrants a trip to the doctor. Frequent nose bleeds at younger ages also are a clue, which is what happened to Carson’s oldest daughter, Taylor. She was diagnosed when she was six months old.

“Taylor had nose bleeds so often, we had to go to Cardinal Glennon’s Emergency Department or The Costas Center to get infused with clotting factors so it would stop,” Carson said.

“Her first period lasted three months but nosebleeds are still her biggest issue.”

Taylor’s sister, Kennedy, and her brother, Nixon, also have been diagnosed with VWD. Both had significant bleeds after undergoing surgery to remove their tonsils and adenoids when they were toddlers and both bruise easily but haven’t had to receive regular infusions.

Taylor, though, isn’t letting her disease slow her down. She learned quickly how to recognize when she needed treatment and was taught to give herself infusions at home. In addition to being an honors student and taking pre-college courses as a freshman at Granite City High School, Taylor plays volleyball for the school and is a highly competitive soccer player for two select teams, Gateway Rush and the Missouri state select Olympic Development Program team.

Taylor Carson (left) goes for the ball for her Gateway Rush 06 girls soccer team during a St. Louis Youth Soccer Association league game last fall

“I’ve played soccer since I was three years old,” laughed Taylor.

“I love playing offense the best. I sometimes worry about whether I might get hit in the face and bleed, but I’m careful and play all year round, both indoor and outdoor soccer.”

“We do encourage our patients with bleeding disorders to live life normally and, yes, they can be physically active,” said Dr. Puetz.

“Taylor is an outstanding example of how kids with a bleeding disorder can be very active in sports and keep their condition under control.”

Taylor has attended the camp for several years. “We all understand what we go through,” she said of her fellow campers.

“We all empathize with each other, but we also let loose and have a lot of fun!”

As she gears up for another soccer game, Taylor’s thoughts are on her future. “I think I want to be a nurse when I get older,” she says.

“Taylor is an outstanding example of how kids with a bleeding disorder can be very active in sports and keep their condition under control.”

In addition to his work at SSM Health Cardinal Glennon, Dr. Puetz serves as medical director of Gateway Hemophilia Association’s annual summer camp, which has been offered to area kids with bleeding disorders for the past 12 years. “These diseases are pretty rare and the camp allows kids to just be kids and enjoy typical summer fun such as swimming, basketball and outdoor activities, all while learning more about becoming self-reliant to care for themselves,” said Dr. Puetz.

“Whenever I was in the hospital, it was cool seeing people help me get better and I want to be a nurse like that.”

Added Ms. Carson, “I have lived with a bleeding disorder myself and now am helping my own children navigate through it. Don’t be overwhelmed. It gets easier with help from a knowledgeable team like at Cardinal Glennon. Take advantage of the resources and help you need and then just live your life — because you can!”

glennon.org Spring/Summer 2021 • 43

NO GRE ATER TRUST: A H I S TO R Y OF SURGICAL E XCELLENCE

44 • SSM Health Cardinal Glennon Children’s Foundation

I

n the early 1950s, a young surgeon named Eugene Lewis, MD, looked out the window of his office in the old Saint Louis University Hospital onto an open field which was to be the future home of SSM Health Cardinal Glennon Children’s Hospital. “It was a very exciting thing for me,” he said.

Dr. Lewis had just returned to his native state, Missouri, and was looking forward to the opening of this new hospital solely devoted to children, the first of its kind in the region. He had trained at Harvard Medical School under William Ladd, MD, considered to be one of the founding fathers of pediatric surgery. While pediatric surgery had yet to be recognized as a specialty, a few years prior, in 1948, the American Academy of Pediatrics established a new category of membership to include what were then called “child surgeons.” These brave souls are to thank for many of the procedures that are today considered routine.

Within the first six months of SSM Health Cardinal Glennon’s opening, Dr. Lewis and his colleagues had performed 961 surgeries. By the time Dr. Lewis became a full-time surgeon in 1958, nearly 3,000 surgeries were being done annually. “There were success stories in all areas of pediatric surgery,” he said. “We did things in those days that were kind of marveled at.”

SSM Health Cardinal Glennon

Jose Greenspon, MD

was at the forefront of medical technology from the very beginning.

Some of the nation’s most talented physicians in the fields of surgery, anesthesiology and radiology comprised the hospital’s first medical staff. These skilled hands were supported by the generosity of donors who have always ensured that SSM Health Cardinal Glennon has the very latest technology to care for its patients. For example, when one of the very first operating room monitors (called a “Bullet” oscilloscope because of its shape) hit the market in the 1960s, SSM Health Cardinal Glennon was the first hospital in St. Louis to have one.

The decades that followed were a time of extraordinary technological advancements in the United States, thanks in part to NASA and the Space Race with the Soviet Union. The field of medicine indirectly benefited from many of the innovations coming out of the space program in the 1970s and 80s, such as portable x-ray machines, ear thermometers, insulin pumps, cooling garments and even wireless telemetry. And many of our region’s “firsts” were happening at SSM Health Cardinal Glennon, such as the first infant kidney transplant in Missouri in 1985.

Fast forward more than 30 years: surgical volume at SSM Health Cardinal Glennon has quadrupled since those early days. Procedures that had not

Charles Huddleston, MD

Cindy Singer, MSN, RN

been dreamed of in 1956 are now standard practice. Surgeries that had to be postponed until a child had grown to a specific size can now be performed within minutes of a baby’s birth, thanks to advancements in anesthesia, imaging and surgical tools that make these procedures safer.

Today, babies and children who may have had a very poor prognosis even ten years ago can now be expected to beat the odds and live a healthy life.

For many types of procedures, the outcomes at SSM Health Cardinal Glennon meet or exceed national benchmarks.

A TRUE CHAMPION Before his retirement in 2016, Dennis Vane, MD, SLUCare surgeon and Chief of Surgery at SSM Health Cardinal Glennon, learned of a new quality improvement program under development by the American College of Surgeons (ACS). The program had started with a pilot group of six centers the prior year, and the data gathered went into what became the program’s manual.

In January of 2017, the American College of Surgeons formally launched the Children’s Surgery Verification program, a quality improvement initiative focused on ensuring that pediatric surgical patients have access to high-quality care. SSM Health Cardinal Glennon began the application process with a “soft

Marya Strand, MD

glennon.org Spring/Summer 2021 • 45

NO GREATER TRUST: A HISTORY OF SURGICAL EXCELLENCE

start” in April of 2017. In October of that year, Cindy Singer, MSN, RN, was asked to serve as the Children’s Surgical Program Manager (CSPM) for this undertaking.

Singer, who came to SSM Health Cardinal Glennon in 2002 as a nurse educator and then surgical team lead, “started with a blank slate. I remember the first time I looked at the full application.

It was 199 pages,” Singer says. “I knew we had our work cut out for us.” As CSPM, Singer was responsible for ensuring that all components of the application were completed correctly and on time.

Before her tenure at SSM Health Cardinal Glennon, Singer spent many years as an operating room nurse and educator for hospitals in central Missouri and the Chicago area. Her expertise as an operating room nurse has served her well in the CSPM role. In addition to the clinical, educational and administrative duties the role entails, Singer is involved in the numerous quality improvement initiatives at SSM Health Cardinal Glennon. “Our Performance Improvement and Patient Safety team, which involves every surgical specialty, meets regularly to discuss trends, event reports and anything we need to work on. This data feeds into our Key Performance Indicators that

are reported to leadership. It’s all connected.”

After more than a year of work, the application was submitted in December of 2018 and by the summer of 2019, the ACS reviewers were ready to make their site visit.

“I think there were 35 people whose schedules I had to clear for the two days the reviewers would be here!”

Singer says.

From that initial site visit, the ACS reviewers presented two areas for improvement that would ensure a successful application. By the next spring, SSM Health Cardinal Glennon was ready for a second, focused site visit.

“Of course, they did not want to do in-person site visits because of COVID-19,” Singer says. “But they also didn’t want to delay things further.We were their first virtual site visit.”

46 • SSM Health Cardinal Glennon Children’s Foundation

In October 2020, the exciting news arrived that SSM Health Cardinal Glennon Children’s Hospital would be the first hospital in St. Louis to receive the American College of Surgeon’s Children’s Surgery Verification, Level I. “There is no greater trust than a parent handing us their child and saying, ‘please help us,’” says Marya Strand, MD, MS, SLUCare physician, Chief Medical Officer and Vice President of Medical Affairs at SSM Health Cardinal Glennon. “For us to be able to say that we have rigorously evaluated ourselves and how we perform the care that we’re trusted to do is a really important part of our work.”

“We are not doing this for a plaque,” Dr. Strand adds. “Our culture of care is moving from specific

metrics to focusing on how it all connects together for the quality of care. This is one more step in that journey.”

“There are things that set children’s hospitals apart from one another. Magnet is one; this is another,” says Dr. Strand. “It has been such a thrill to have been successful in this application and to know that what we are doing is good work for those in the community who need us.”

“It really levels the playing field for children’s surgery because the ACS requires a lot of things to be in place.

Level I recognition means that any service a children’s hospital should provide, we do provide at the highest level of care,” says Jose Greenspon, MD, SLUCare pediatric surgeon.

“Of course, we are proud of this honor because it is a validation of all the hard work and effort that everyone puts into their work,” says Charles Huddleston, MD, SLUCare cardiothoracic surgeon and Interim Chief of Surgery at SSM Health Cardinal Glennon. “We are all very proud of what Cindy [Singer] almost singlehandedly accomplished. We are very impressed by her.”

COLLABORATION, COLLEGIALITY AND COMPASSION According to the program manual, one of the primary requirements of the Children’s Surgery Verification

is evidence of “multidisciplinary management of comorbidities…

Level I facilities must be prepared to manage the most complex patients and must have available a full spectrum of specialists…involving multiple disciplines that transcend traditional departmental hierarchies.”

“ACS wants to know that our teams are having discussions, that everyone is allowed to weigh in and that purposeful thought goes into everything before that child goes into surgery,” Singer says.

And that is something that SSM Health Cardinal Glennon does very well. One of the things that stood out the most to the ACS reviewers was the obvious collaborative spirit among all members of the medical and nursing staff, supportive caregivers and even Environmental Services.

Singer laughs when she remembers, “It was like they had a hard time believing that everyone gets along so well.”

Dr. Strand adds: “We all work at SSM Health Cardinal Glennon because of the mission. It’s what gets us out of bed and through these doors every day. When we have a common goal of serving others and being present for others to provide the best care, it’s easy to get along because you’re all swimming in the same direction.”

“It’s one of the reasons I came to work here,” says Dr. Greenspon. “I could tell at my first interview that this is the place where everybody pushes together. There is always a community effort to provide the very best care possible.”

“This level of collegiality has been in place for a long time, not just among surgical services, but everyone,” says Dr. Huddleston. “It comes from the top down and has for many years.”

Most attribute this sense of community to our longstanding association with the Franciscan Sisters of Mary, whose core values of respect and compassion guide our daily work. In a 2006 interview for the hospital’s 50th anniversary, then-hospital president Doug Ries had this to say: “The feeling of family-centeredness, the outpouring of staff, all of that is very palpable…

Without the type of people who work here, it wouldn’t be Cardinal Glennon. Our culture is reaching out and ministering to the needs of kids.

It is other-centered and humbling… somehow people who come to Cardinal Glennon get it.”

“It’s tangible,” says Dr. Strand.

“You walk in the building and you can feel it. It’s woven into the culture here. It’s a really remarkable thing.”

It’s the Glennon Factor. glennon.org Spring/Summer 2021 • 47

CHILDREN’S MIRACLE NETWORK UPDATE

Teagan, Grant & Sebastian 2021 CMN Ambassadors

T

eagan Smith and twins Grant and Sebastian Moss, all 8 years old, were born with rare congenital defects.

Thanks to their care at SSM Health Cardinal Glennon Children’s Hospital, they are forging ahead through their lives. They will represent their hospital at fundraising events this year as our 2021 Children’s Miracle Network (CMN) Ambassadors. CMN supports 170 pediatric hospitals across the U.S. and Canada.

Grant and Sebastian Grant and Sebastian Moss are two of a kind — and one in 100,000.

The identical twins were born in February 2013. Both seemed healthy until their sixth day of life, when they began began experiencing difficulties feeding and breathing The doctors at their birthing hospital suspected a genetic disorder and they were transported to SSM Health Cardinal Glennon.

In the Dana Brown Neonatal Intensive Care Unit (NICU) at SSM Health Cardinal Glennon, the twins were placed on kidney dialysis and extra corporeal membrane oxygenation (ECMO) machines. They were attended by the hospital’s chiefs of neonatology, pediatric surgery, nephrology and genetics.

“It was all hands on deck,” recalled their mother, Amber Moss.

“There was so much equipment and so many people. The focus was just trying to keep them alive.”

A nurse pulled Mrs. Moss aside.

“She was so patient and so calm.

She explained Watch their Video that all these people were collaborating to get the boys’ ammonia levels down – since that was likely

48 • SSM Health Cardinal Glennon Children’s Foundation

causing their body systems to fail.”

Over several days Grant and Sebastian were stabilized.

Stephen Braddock, MD, Director of Medical Genetics at SSM Health Cardinal Glennon and a SLUCare physician, told Mrs. Moss and her husband, John, that the twins carried a genetic defect causing propionic acidemia, a metabolic disease that affects about one in 100,000 people.

People with this genetic defect lack an enzyme that processes some components of proteins and fats.

Organic acids that accumulate in the blood and urine are toxic to the body’s organs.

Grant and Sebastian remained in the Dana Brown NICU for more than a month.

“One of the biggest challenges to getting home was feeding,” Mrs. Moss said. “They have to follow a specific diet their whole lives. They have very specific food formulas so their bodies don’t lack nutrition.”

Both boys have come to the hospital for acute episodes. They visit the Danis Pediatric Center for primary care and are followed by the hospital’s Complex Care Team, FootprintsSM palliative care program and specialties including genetics, neurology, nutrition, immunology, gastroenterology and ophthalmology.

Glennon Kids — and twins — Grant and Sebastian Moss

“The boys are in second grade.

Both love to cause a decent amount of chaos,” joked Mrs. Moss. “Neither needs to be asked twice if they want to go outside to play. I try my best

from home” and is looking forward to her sons serving as serving as CMN Ambassadors this year. “This gives me the chance to talk about their very rare condition and show the world what great work is being done here.”

Teagan “Teagan is so strong. I know that whatever we face in the future, she can get through anything,” said her mother, Alex Smith.

Teagan faced many issues after she was born in 2013. She looked “bluish,” so x-rays were ordered and revealed her complex heart defects — transposition of the great arteries with ventricular septal defect and pulmonary stenosis.

Also, she had dextrocardia — her heart is pointed toward the right side of her body rather than the left — and “situs inversus” — her organs are positioned on the wrong side of her chest and abdomen.

Teagan was immediately transported to the Dana Brown Neonatal Intensive Care Unit (NICU) at SSM Health Cardinal Glennon.

“It was all so surreal,” Ms. Smith said. “Having a baby is an experience enough, but I don’t think anyone can really prepare you for seeing your baby sedated with so many tubes and wires and machines.

“I remember the staff doing everything they could to build my trust and put me at ease. They drew pictures and explained things the easiest way possible. The nurses always made sure to translate the medical language into words I could understand. I was so happy I could stay with her every night in the NICU. It made an uncomfortable and scary situation much more comfortable.”

“This gives me the chance to talk about their very rare condition and show the world what great work is being done here.” not to let them feel like they have limitations. What the future will look like is really unknown.”

She calls SSM Health Cardinal Glennon their family’s “home away

Teagan was followed by Kenneth Schowengerdt, MD, Director of the Dorothy and Larry Dallas Heart Center at SSM Health Cardinal Glennon. During her first

Glennon Kid, Teagan

Watch Teagan’s Video

months she underwent two balloon procedures in the hospital’s Pediatric Hybrid Cardiac Catheterization Suite. At nine months she underwent a complex open-heart reconstruction by Andrew Fiore, MD, Director of Cardiothoracic Surgery.

Dr. Schowengerdt and Dr. Fiore are SLUCare physicians.

“Her surgery lasted 10 hours,” Ms. Smith recalled. “She spent six days in the pediatric intensive care unit, then another six days in the transitional care unit.”

Teagan now visits the hospital just once a year for a checkup.

“We knew this was something we would have to deal with for life,” Ms. Smith said. “We know another surgery is pending, but we know we’re in good hands.

“It is always so welcoming at Glennon. Teagan is never scared to go there, and everyone makes it such a good experience. I am honored to share our experience and do anything I can to help the hospital. My family is excited to work with Children’s Miracle Network to do just that!” glennon.org Spring/Summer 2021 • 49

At a Crossroads “ in History ”

Transforming the vision of health care for kids and how we reach them

50 • SSM Health Cardinal Glennon Children’s Foundation

Marya Strand, MD, MS in the NICU in 2017

M

arya Strand, MD, MS, did not plan to become the chief medical officer (CMO) of SSM Health Cardinal Glennon Children’s Hospital.

“If you would have asked me three years ago if I wanted to be CMO I would have laughed. I take care of babies in the neonatal intensive care unit. I have done that for my whole career,” said the SLUCare neonatal physician.

Then she realized she could play a role in the hospital’s growth as a resource for pediatric health across a broad swath of the Midwest.

“I love my clinical practice but that is a narrow slice of children’s health. As I got more involved in administration and serving as the medical staff president, I realized the CMO has the opportunity to impact pediatric and adolescent health care at the regional level,” she said.

“How do we make sure the kids in this region have enough care to meet their basic health needs? This is an opportunity that doesn’t come

Dr. Strand joined the staff of SSM Health Cardinal Glennon in 2012. She is a member of the Neonatal Task Force for the International Liaison Committee on Resuscitation, an international group that determines guidelines for infant resuscitation. She also serves on the Neonatal Resuscitation Program Steering Committee.

Her husband, Eric A. Strand, MD, is a professor and Chief of General Obstetrics and Gynecology at Washington University School of Medicine. They have four sons, ranging in age from 14 to 21.

THE CHIEF MEDICAL OFFICER “The CMO’s job is trying to keep the medical staff and hospital pushing in a similar direction,” Dr. Strand said. “We all have the same over-arching goal of high-quality, safe health care for children across the ministry and the region, but we try to break that into the pieces we want to accomplish.”

SSM Health Cardinal Glennon has long extended its care across Missouri and southern Illinois by

“The CMO’s job is trying to keep the medical staff and hospital pushing in a similar direction...”

Marya Strand, MD, MS, Chief Medical Officer and Vice President of Medical Affairs at SSM Health Cardinal Glennon Children’s Hospital

along very often. I was thrilled to be able to take the position. Glennon is a special place, more than any place I have ever worked. It lives its mission every day. The dedication to be a part of the community and ensuring health care for kids in the community and around the region is an inspiring motivation.”

Dr. Strand grew up in Louisville, Ky., and graduated from Vanderbilt University School of Medicine in Nashville, Tennessee, where she also completed her pediatric residency.

She did her fellowship in neonatal medicine at Cincinnati Children’s Hospital Medical Center in Ohio.

partnering with other health care providers, particularly in rural regions.

“St. Louis has the only children’s hospitals for 300 miles around,” Dr. Strand said. “We need to leverage our services to make sure the kids outside of St. Louis get preventive care and the maintenance care they need for long-term illnesses and chronic diseases. That care can be really hard for them to get.”

HUB AND SPOKES Additional spokes will be added to the hub of care delivery based at SSM Health Cardinal Glennon, Dr. Strand said. “It is critical that we reach out and partner with the

glennon.org Spring/Summer 2021 • 51

AT A CROSSROADS IN HISTORY CMO DR. MARYA STRAND community to make sure we are providing support for kids’ health, not just within our walls where we know we can control the quality and the care we provide, but outside of our walls.

“Maybe we will not be doing it all right here on Grand Boulevard where there is a hub of our super sub-specialists. Maybe we will have spokes to other areas of the community where children can get care and we can figure out who needs to come down to Grand,” she continued.

“We want to leverage telehealth technologies to transfer data from the hospital and specialists to families, and from families to specialists, so we have a whole umbrella of health care across the region.”

The hospital is part of the SSM Health system, which operates hospitals in four states, so it provides pediatric and adolescent support to some of its partner community hospitals. SSM Health Cardinal Glennon also works with other hospital systems.

“We are in constant communication with other health care networks in St. Louis and across Missouri and Illinois,” Dr. Strand said. “We want to be resources for those networks to make sure that kids are getting the high-quality care that we can provide. We are talking about pediatric health care and also how we can support maternal health at the time of labor and delivery.”

In 2019, SSM Health Cardinal Glennon opened new pediatric specialty services centers in north and south St. Louis County to provide convenient access to its subspecialists. The hospital now offers care at six off-site centers in the St. Louis area.

The hospital administration has also responded to the need for pediatric urgent care, Dr. Strand said. “There is urgent care all around us, but little of it is pediatric-specific. We have added

urgent care hours to North and South County, so we utilize that nice space and give kids a place to go that isn’t an emergency department or an adult urgent care.”

ADVOCACY The hospital’s leadership extends to advocating for the needs of young people with government and private sources of reimbursement.

“That is a really important part of how Cardinal Glennon works for kids,” Dr. Strand said. “We have folks who are advocating at the state level for the expansion of Medicaid and CHIP (Children’s Health Insurance Program) and talking to the legislators about reimbursement. They also are in discussions with private payers.

It is critically important that there be a financial pathway for Cardinal Glennon to stay solvent and make sure that we can be here to provide the care in the long run.”

have music therapy, pet therapy, art therapy and dance therapy, in addition to the traditional child life,” she said.

“That has been so instrumental across all of our patient populations in helping kids to be more comfortable with their care. It gives them understanding and encouragement. There are all sorts of ways that Child Life helps these kids to understand and accept their treatments.”

Behind the scenes, the foundation has also supported the hospital’s Center for Advancing Pediatric Excellence.

“That is our data and analytics team. It is using artificial intelligence and other modalities to help us pinpoint spots where we need to improve care and help us analyze the changes to make sure we are meeting our standards,” Dr. Strand said.

“Data is not very glamorous but the use of data analytics is going to

“We are at a very exciting crossroads. I am excited to see what the next five years are going to bring to Cardinal Glennon and pediatric health care...”

PHILANTHROPY The SSM Health Cardinal Glennon Children’s Foundation is another source of support for the hospital’s care for patients and families, Dr. Strand explains.

“The foundation is integral and critical to our mission. No group of backers could be more enthusiastic or devoted than our foundation and the Board of Governors. They embrace our ideas and allow us the resources and the latitude to empower our mission every day.”

One example is the Child Life program that comforts and aids patients and families.

“Our Child Life division has blossomed through foundation funds,” Dr. Strand said. “We have school teachers in the building. We

52 • SSM Health Cardinal Glennon Children’s Foundation

be pivotal in how we improve care in the decades to come. We are at the leading edge of building an analytics team here for child health that other children’s hospitals simply don’t have. That is thanks to the foundation.”

LOOKING AHEAD “We are at a very exciting crossroads. I am excited to see what the next five years are going to bring to Cardinal Glennon and pediatric health care. I don’t know what it is going to look like or how our buildings might change, but I know the relationships between families and our health care ministry are going to be different and more accessible.”

Big recognition helps Big smallest recognition helps our patients. our smallest patients.

Nationally ranked care close to home.

At SSM Healthranked Cardinal Glennon Children’s Hospital, our SLUCare Nationally care close to home.

physicians are proud to deliver compassionate, expert care to all our pediatric patients.

At SSM Health Cardinal Glennon Children’s Hospital, our SLUCare We offer sixare nationally pediatric specialties: Cardiology & Heart Gastroenterology physicians proud ranked to deliver compassionate, expert care to all Surgery, our pediatric patients. & GI Surgery, Neonatology, Oncology, Pulmonology, and Urology.

We offer six nationally ranked pediatric specialties: Cardiology & Heart Surgery, Gastroenterology Our partner with you to ensure the best outcomes for patients entrusted to our care. & GI providers Surgery, Neonatology, Oncology, Pulmonology, and Urology.

Working together, we can provide the most advanced health care for every child.

Our providers partner with you to ensure the best outcomes for patients entrusted to our care.

Please visit us at cardinalglennon.com to learn more about exceptional pediatric Working together, we can provide the most advanced healthour care for every child. specialty care.

Please visit us at cardinalglennon.com to learn more about our exceptional pediatric specialty care.

©2020 SSM Health. All rights reserved. STL-STL-16-168874 10/20

glennon.org Spring/Summer 2021 • 53 ©2020 SSM Health. All rights reserved. STL-STL-16-168874 10/20

GLENNON AMBASSADORS

Glennon Ambassadors

G

lennon Ambassadors are parents or patients who help us share our mission and grow the circle of support for the hospital.

As an extension of their clinical relationship, many of our patient families find value and purpose in saying “yes” to opportunities that can support the hospital, our staff and patient families.

Grateful Patient Coordinator Laura Wulf says, “Parents are an incredible asset to us. They are our best storytellers because they live,

eat and breathe our hospital culture every day. Their stories showcase our strengths and opportunities as an organization.”

Wulf, a former Cardinal Glennon oncology nurse and Glennon mom herself, considers it a privilege to give families extra “purpose” to their journey. “All of our parents and families have unique situations of time, talent and geography. Some spent a short, yet impactful amount of time here, and some have spent a lifetime here. It’s fun to explore their

inspirations for staying connected and figure out opportunities with them from there. There’s always a way to connect the dots - story sharing, serving on a hospital committee, writing thank you notes, speaking opportunities, volunteering - any number of things,” says Wulf. “It is a gift that our families have willingness to share of themselves. It is the best way we can effectively show what exceptional care looks like and the impact of support.”

Meet some Glennon Ambassadors who are making a difference: Lauren and Tim Simon In 2018, Lauren Simon was pregnant with her second daughter, Emily. Big sister, Natalie, was 1 year old. Emily was diagnosed in utero at 24 weeks with hypoplastic left heart syndrome, meaning the left side of Emily’s heart did not form.

Lauren and Tim were referred to the St. Louis Fetal Care Institute Emily, Lauren, Tim and Natalie Simon

54 • SSM Health Cardinal Glennon Children’s Foundation

at SSM Health Cardinal Glennon. At 27 weeks gestation, Lauren and Tim met the doctors and nurses who would be supporting them through their journey. Once Emily was born, her heart would not be strong enough to support life.

“It was a scary time, a lot to take in,” says Lauren. “They took care of us as much as they took care of Emily.” Doctors at

SSM Health Cardinal Glennon performed two open heart surgeries on Emily – the first at 6 days old and the second at 4 months. Tim comments, “I’ve lived in St. Louis my whole life just about...and driven by this hospital a ton. I never realized I would need this hospital or understood what went on inside those walls. We might be a family of three instead of a family of four, if it weren’t for them. It’s hard to put into words how much that means to you.”

Since her last surgery, Emily has become a happy, silly toddler. She is now 3 years old and much like every other toddler. She loves to play with her sister, ride her tricycle and play on her swing set. She loves Peppa Pig and she especially loves talking. She is hitting all of her developmental milestones and is even advanced in some areas.

Emily visits her cardiologist, Renuka Peterson, MD, twice a year at the Dallas Heart Center. 2021 is a big year for Emily. She had a cardiac catheterization in March 2021 and underwent her third - and final - planned open heart surgery in spring 2021. Emily will follow up with a cardiologist for the rest of her life, hopefully with just a yearly checkup.

Lauren and Tim have given their gratitude some legs and have done a number of things with the hospital to show their support. They shared their story (recorded and in person) as part of our annual Heart and Soul event in 2019. Tim has recently joined the hospital Ethics Committee, and both Lauren and Tim serve on the Patient Family Advisory Council for the hospital.

“Our journey at Cardinal Glennon couldn’t be any better,” says Lauren. “We are so thankful for all of the amazing doctors, nurses and medical professionals for treating us like family while providing the best care to Emily. We are forever grateful to them.”

Amber Moss Grant and Sebastian are identical twin boys who were born to new parents Amber and John on February 27, 2013. Amber had an uneventful pregnancy, and though the boys arrived early at 34 weeks, they came into the world seemingly healthy. After a couple routine days in the NICU stepdown unit of their local birthing hospital, the boys started deteriorating in multiple ways. By day 6 of life, both boys were lethargic and having trouble feeding and breathing. Within a 12 hour period, both boys were intubated and their blood ammonia levels were dangerously high. A full genetic workup was needed, as well as intensive supportive care, and it was quickly decided to transfer Grant and Sebastian to SSM Health Cardinal Glennon. Within hours they were both on a combination of dialysis and ECMO,” Amber said.

Grant and Sebastian were eventually diagnosed with Propionic Acidemia, an inherited, rare metabolic disorder characterized by the lack of an enzyme involved in the breakdown of amino acids (the building blocks of proteins).

Children with this condition are

Grant, Amber and Sebastian Moss

unable to process certain parts of proteins and lipids (fats) properly, which leads to an abnormal buildup of organic acids and toxins in the body. Without appropriate nutrition and treatment, the accumulation of excessive levels of acids in the

blood and body tissues affects nearly all organ systems in a dangerous way.

Since their initial NICU stay, Grant and Sebastian have had several visits to the Emergency Department and re-admissions to the hospital. They have their primary care doctor visits at SSM Health Cardinal Glennon’s Danis Pediatric Center. They are also followed by the hospital’s Complex Care Team, and Footprints℠, the hospital’s palliative care team.

The boys’ care is a coordinated effort involving many specialties, which currently include genetics, neurology, nutrition, immunology, GI and ophthalmology.

“My biggest challenge is keeping them healthy and making sure that they are able to live their best lives. I try my best not to let them feel like they have limitations.

What the future will look like is really unknown,” says Amber.

Amber refers to SSM Health Cardinal Glennon as her “home away from home.” Over the years, she has found multiple outlets to show gratitude and appreciation for those who have cared for her family. She has shared her story and feedback at various hospital team meetings and serves on the hospital Patient Family Advisory Council. Most recently, the Moss family agreed to serve as one of the 2021 Children’s Miracle Network Ambassador families.

“The staff are truly so amazing – from the nurses and doctors to the housekeepers and greeters at the front desk. They are my support system – clinically and emotionally.

The opportunity to be an Ambassador for Cardinal Glennon with Children’s Miracle Network is something I’m excited to do. My boys have a very rare condition.

This gives me the chance to talk about it, show my appreciation to the hospital and also show the glennon.org Spring/Summer 2021 • 55

community and the world what great work is being done here.”

Jennifer Walkenhorst Jennifer’s son, Conner, was diagnosed prenatally at 21 weeks with heterotaxy, a condition in which the internal organs are abnormally arranged in the chest and abdomen. In Conner’s case, his heart was flipped and on the opposite side. In the 10 weeks that followed that appointment, Jennifer spent every Monday undergoing three to four hours of ultrasound evaluations and stress testing at the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon. At 30 weeks pregnant, Jennifer met Charles Huddleston, MD, SLUCare physician and cardiothoracic surgeon at SSM Health Cardinal Glennon Children’s Hospital, who planned the “roadmap” for baby Conner. She had a planned delivery at 39 weeks.

Within 24 hours of Conner’s birth, he was transported to the Dana Brown Neonatal Intensive Care Unit at SSM Health Cardinal Glennon (NICU) and it was soon determined that he needed a heart transplant. Conner had intestinal malrotation, asplenia and an anatomy that no one had ever seen before – all that would need to be addressed in addition to his sick heart. Conner’s new heart arrived two months after his birth and his road to recovery included multiple hurdles. Jennifer kept a journal, and formed close bonds with her NICU primary nurses. “Those girls were my lifeline,” she recalls. “They took care of me and gave me confidence to go home at night.” She recalled one of her primary nurses stating,

Jennifer and Conner Walkenhorst

“When you clock out – we clock in.

He’s our baby, too, and you need to feel confident about how much we love him.”

The steady months of hospitalization necessitated weekly therapy at home, including occupational therapy once a week, physical therapy every other week and dietician visits monthly to follow his progress. “Conner is 4 years old now, and typically very active and busy with OT, PT, speech therapy, nursery school and social/ emotional skill development,” Jennifer says. “COVID-19 has put limitations on how all of that normally takes place, so he has been doing lots of activities to try to get all of his therapies in. I knew this would be his ‘life,’ and I am grateful for every positive step – every good day. You find a way to make it work,” she says.

Two 3D models were created of Conner’s heart and both have been pivotal to Jennifer’s understanding, and to her clinical team, as they continue to monitor Conner’s development and progress with his one-of-a-kind anatomy.

Jennifer willingly gives back to the hospital that has been there for her and encourages others to

do the same. “Cardinal Glennon’s blessings are too many to state – from the technological advances to accessible care,” says Jennifer.

“But the greatest blessings are the people, who have this gift of balancing their clinical know-how with their passion and compassion for people. You don’t find that everywhere, and that’s a very important thing to families,” she states.

Jennifer has shared her story through multiple outlets from radio interviews and hospital events to print ads and mailings. She has been a sponsor of our Heart & Soul annual event which benefits the Dorothy and Larry Dallas Heart Center, and has served on the planning committee for the event for several years. “I know my dollars will make a difference to everyone, and I give to help people who cannot afford the path and treatments necessary for their children.” She continues, “I was raised Catholic, raised to give to others and all babies have a right to be here and receive the care they desperately need. There is no better place – simply no better place.”

Are you a parent or patient family of SSM Health Cardinal Glennon who would like to connect, share or make a difference?

Contact Grateful Patient Coordinator Laura Wulf at 314-678-6635 or laura.wulf@ssmhealth.com or visit GlennonAmbassadors.org.

56 • SSM Health Cardinal Glennon Children’s Foundation

Six Steps to Safe Sleep for Your Baby

1 2

Your baby should always sleep ALONE. Your baby should always sleep on his or her BACK.

3

4 5

Your baby should always sleep in a crib or pack ‘n play.

Put nothing in your baby’s sleep area.

Do not overdress your baby.

6

Do not expose your baby to smoke.

314-678-5474 or visit glennon.org/safetyprogram to learn more.

Call

glennon.org Spring/Summer 2021 • 57

ASK THE EXPERTS

Glennon Kid Kevin gains the sleep necessary to fuel his growth and development

Ask the Experts:

Getting a Good Night’s Sleep

A

re your kids getting enough sleep? Chances are they’re not. The Centers for Disease Control and Prevention (CDC) notes that 6 out of 10 middle schoolers and 7 out of 10 high schoolers don’t get enough sleep. Younger children are also not getting the recommended amount of good quality sleep.

Sleep is necessary to rest minds and fuel growth and development.

Newborns and infants need at least 12 to 17 hours of sleep within 24 hours, including daytime naps.

Elementary school children should sleep for 9 to 12 hours, and teens should get between 8 and 10 hours of sleep each night.

We asked SLUCare pulmonologist and board-certified sleep medicine specialist Brent Haberman, MD, how to help children get a good night’s sleep.

What are some clues that my child isn’t getting enough sleep?

Brent Haberman, MD, SLUCare pulmonologist and boardcertified sleep medicine specialist

Being drowsy or cranky in the morning, having difficulty waking up or falling asleep when not stimulated are signals that your child may be sleep-deprived. Even hyperactivity can be a sign. Young children who are sleep deprived can sometimes run around a room and

58 • SSM Health Cardinal Glennon Children’s Foundation

parents don’t realize their child is simply trying to stay awake.

How can I encourage good sleep habits?

Establishing a bedtime routine that calms children down and allows them to soothe themselves to sleep is the key to a good night’s sleep.

The routine can include a warm bath, reading a book or playing a quiet game. Shut off anything with a lighted screen — phone, computer, tablet, television — at least one hour before bedtime and discourage any fast-paced activity before bed. I recommend several books: •H ealthy Sleep Habits, Happy Child

by Marc Weissbluth, MD •S olve Your Child’s Sleep Problems

by Richard Ferber, MD •O n Becoming Babywise by Robert Bucknam.

What if my child complains about a strict bedtime routine?

Be a bit flexible and allow them to make some choices. Does your child want to read before or after a bath? Play for 15 minutes before or after getting pajamas on? If they are part of the decisionmaking process, they are more prone to stick with a bedtime routine.

body’s ability to regulate its internal circadian rhythm.

This internal clock is responsible for our sleep-wake cycles.

What about naps?

Naps are normal and vital for infants and young children. An occasional nap is fine for older children, but falling asleep regularly could be a sign of sleep deprivation or that they have a sleep disorder.

What if my child wakes up in the middle of the night?

When should I see a sleep They should be listened to medicine specialist? and then put back to bed. If If your child is consistently they come into your room, sleepy, snores loudly or walk with your child back wakes up multiple times to their room and make during the night, talk with Jack Griswold during a visit to The Pediatric Sleep and sure they get back into Research Center at SSM Health Cardinal Glennon your doctor. A sleep study bed to fall asleep. Minimize may be recommended. If conversation and don’t These are not meant to be used your child exhibits fear or anxiety turn on any bright lights. for infants, as they may pose a for several weeks and can’t be Co-sleeping in a parent’s suffocation hazard. comforted, that also may be the bedroom is not recommended for time to seek advice from your safety and behavioral reasons. pediatrician.

Should I allow a child to have a television in their room?

Should I rock my child What other tips do you back to sleep?

We discourage any television in a recommend? child’s room because it can keep I don’t advise that. Put them in bed their brains overly stimulated and Don’t drink anything caffeinated while they are drowsy yet still awake delay sleep.

Several studies have in the late afternoon and evening. because children need to learn how shown that having a television in These include soda, energy drinks, to fall asleep on their own. the bedroom has been associated hot chocolate, tea and even some with reduced sleep. Older children bottled waters that have caffeine also may have phones or computers What about night lights?

We all need to recognize that good in their rooms. Monitor late-night quality sleep is vital to our health Night lights are fine as long as usage and set limits on how late and well-being. Sleep allows us to they are not overly bright to they can be used. You may have to recharge our bodies, both physically interfere with sleep. Some lights tell your child to leave their phones and mentally. When you don’t progressively dim over time, which and computers in another room. get enough sleep, it can lead to may be good to use. Also, check the attention or behavioral problems, a brightness of digital clocks, which diminished immune system, fatigue may have intense blue lights that Should I let my child sleep late on and poor mental health. So, if you interfere with sleep unless they are weekends? or your child are not getting enough turned away from the bed.

Allowing a child to sleep late is okay sleep, it’s really important to find every once in a while. Still, it’s not a out why. good practice because not only will Are “security” blankets okay it make it difficult for them to fall to use? asleep at an appropriate bedtime, A small toy or blanket may help it also will negatively impact the comfort your child while sleeping. glennon.org Spring/Summer 2021 • 59

GLENNON GUILD

Glennon Card

Sweet Babies

Glennon Style

Glennon Guild: There for Glennon Kids When it Matters Most

T

he Glennon Guild is a dynamic and driven women’s auxiliary with more than 300 members committed to the children and families of SSM Health Cardinal Glennon Children’s Hospital. For more than 60 years, the Glennon Guild has worked to fulfill the hospital’s greatest needs through various fundraising and volunteer efforts.

While 2020 presented the Glennon Guild with many obstacles to overcome, the women worked even harder to support Cardinal Glennon kids when it was needed most. This dedicated group of women altered their existing events and created new opportunities to raise critical funds and awareness for SSM Health Cardinal Glennon. The Glennon Guild’s incredible fundraising efforts benefited programs like the Mobile

Intensive Care Units (MICUs), the Milk Lab, Child Life Services, nursing education and additional support for hundreds of Glennon families in need.

SWEET BABIES/ GiFT RESOURCE ROOM The Glennon Guild helps run the Sweet Babies/GiFT (Giving is a Family Tradition) resource room located conveniently on the ground floor of the hospital. The Guild works in partnership with Sweet Babies and GiFT, two local nonprofit organizations, and together generously provide children’s items to SSM Health Cardinal Glennon.

Social workers can access items 24/7 to support families in need who are being discharged home, visiting the Emergency Room or coming for follow-up appointments.

Glennon Guild member, Cathy

60 • SSM Health Cardinal Glennon Children’s Foundation

Wilmott, and devoted volunteers stock the supplies, coordinate product donations and deliveries and shop when needed to ensure families are prepared to care for young patients in their homes.

Despite the pandemic, nearly 600 families were served with countless diapers, wipes, bottles, blankets, clothes and cleaning supplies.

Sweet Babies

October 15-24

GLENNON STYLE The Glennon Guild was slated to host its last Glennon Style event on April 24, 2020. The event, which includes a fashion show, cocktail reception and silent auction, was unfortunately cancelled due to the pandemic. With the help of generous sponsors, hardworking volunteers and dedicated donors, the Glennon Guild still raised more than $154,000 for the Mobile Intensive Care Units (MICUs) despite the last-minute cancellation.

year – the discount shopping campaign was still able to raise more than $170,000 for the greatest needs of the hospital in 2020.

The Glennon Card program is a unique discount shopping opportunity for individuals to support both SSM Health Gift Tags for Glennon Cardinal Glennon and local participating $5,000 for the greatest needs of businesses.

With the purchase of a the hospital. Local designers Gigi $60 digital or paper Glennon Card, Lombrano, Patti Porter and Julie the buyer receives a 20% discount Redmond transformed their clients’ at more than 250 businesses, homes into breathtaking winter salons, attractions and eateries wonderlands. It was a beautiful during the 10-day shopping period and festive day enjoyed by all every October. who attended in person — while Vicki Mower, Glennon adhering to safety guidelines — Guild member and Glennon or watched virtually from the Card Committee Chairperson, comfort of their own home. acknowledged, “although it was a The date and details for very tough year, we truly adapted the 2021 Deck the Halls of our program and marketing efforts.

Glennon Homes event will be Another positive was helping our announced soon! local businesses reach customers during the difficult time while raising funds for Glennon kids and families in need.”

VE SA VE SA0 Planning is already underway % 220% for this year’s Glennon Card Glennon Card Glennon Card shopping days, which will be held from October 15-24, 2021. Please visit GlennonCard.org for more information on the program and GLENNON CARD how to get involved.

One of the most successful

Deck the Halls

DECK THE HALLS OF GLENNON HOMES On Saturday, December 5, 2020, the Glennon Guild hosted its first holiday home tour, Deck the Halls of Glennon Homes, sponsored by St. Louis Homes and Lifestyles Magazine. The event was created to ensure the Glennon Guild could continue raising vital funds for Cardinal Glennon kids despite the difficult year. Deck the Halls of Glennon Homes was a smashing success, bringing in

2021

GIFT TAGS FOR GLENNON One of the Glennon Guild’s exciting fundraising initiatives is the Gift Tags for Glennon program. Several Glennon Guild members worked together to create 300 bundles of 25 handmade gift tags to sell. The Gift Tags for Glennon program raised more than $5,800 for the Child Life Department at SSM Health Cardinal Glennon in 2020.

fundraising partnerships between the Glennon Guild and the foundation is the Glennon Card. The Glennon Card has raised has raised more than $1.87 million for SSM Health Cardinal Glennon over the past ten years! Since the program’s inception in 2011, the concept of welcoming local businesses, retailers, restaurants and online companies to participate in the Glennon Card 20% discount shopping initiative has grown exponentially. With the support of more than 250 participating sponsors, donors, restaurants and businesses – many of whom struggled over the past

Join the Glennon Guild The Glennon Guild welcomes vibrant women who want to get involved and lift the Glennon children, families and staff with their love and support.

Please contact Meg Terry at megterry@me.com for more information. We look forward to hearing from you!

glennon.org Spring/Summer 2021 • 61

DEVELOPMENT BOARD Development Board Members

Development Board

T

he Development Board of SSM Health Cardinal Glennon Children’s Foundation is a group of young professionals with ties to the metropolitan St. Louis community who want to make a difference in the lives of patients at SSM Health Cardinal Glennon Children’s Hospital.

The Development Board’s mission is rooted in the group’s desire to support the operations and capital expenditures of SSM Health Cardinal Glennon. Created by the Board of Governors of SSM Health Cardinal Glennon, the Development Board is comprised of and led by volunteers who work alongside SSM Health Cardinal Glennon Children’s Foundation staff to execute and support various annual fundraising events.

Event support from Development Board members comes in many ways these days.

From serving on the planning committee to soliciting auction items, raffle prizes, ticket sales or sponsorships and volunteering their time with event-day tasks or office assistance – there’s something for everyone! Friend-raising is also key.

Their approach is twofold: introduce new families to the hospital’s mission and new candidates to the Development Board.

The Development Board has played a key role in various events over the last several decades leaving a lasting impact within the hospital. Through their leadership and volunteerism, their 2021 focus is to ensure the success of fundraising events like Scoops of Fun, Glennon Golf Classic, Field-Side Party at Glennon Gallop and the Sun Run, which raise vital funds for our patients and families.

Scoops of Fun The annual Scoops of Fun event benefits The Footprints℠ team at the hospital. Thanks to event proceeds and donor support, the Footprints℠ team continues to grow, now serving 290 families each year. This service makes a difference in the lives of children and their families through complementary services like counseling or respite care, as well as assistance with basic needs such as transportation, gas cards, groceries, utility assistance and other essential services.

Glennon Golf Classic The Glennon Golf Classic, held every fall, benefits the hospital’s Music Therapy Program, which has also seen growth in recent years with our board-certified music therapists who complete 4,600

62 • SSM Health Cardinal Glennon Children’s Foundation

patient encounters annually. This service brings the healing power of music to patients of all ages dealing with a variety of medical challenges.

Music therapy not only helps patients cope with their illness and treatments, but also helps parents connect and communicate with their children in unique ways.

Field-Side Party The Field-Side Party at Glennon Gallop has drawn hundreds of people every year with proceeds benefiting The Danis Pediatric Center at SSM Health Cardinal Glennon. Danis Pediatrics provides comprehensive pediatric primary care to all children, regardless of their ability to pay. More than 80% of the families treated at Danis Pediatrics live in poverty and would lack access to primary pediatric care without these compassionate and dedicated professionals. Thanks to generous support, Danis Pediatrics Center services and programs continue to expand. From providing diapers and meal cards to bus passes, counseling services and so much more, Danis Pediatrics strives for preventive care that addresses social determinants of health (poverty, food insecurity, mental health, language barriers and more).

Sun Run Proceeds from the Sun Run support the Children’s Fund, which allows multiple departments and areas throughout the hospital to provide a better experience for our patients and families. A few examples include: • Providing funds for ongoing staff education and equipment upgrades, both of which are key to ensuring exceptional health care.

• Creating family-friendly spaces at the hospital, which provide a sense of distraction for patients and families while circumstances may be anything but normal. These spaces include: • The underwater Costas Center for outpatient oncology and hematology treatments • The beach-themed 4-North inpatient floor • The treehouse theater in the Emergency Department waiting room • The forest setting in the Pediatric Intensive Care Unit

In addition to leading events which provide essential funding for hospital operations, the Development Board explores other fundraising initiatives, supports the efforts of the Board of Governors and advocates to enhance the public profile of the hospital at both a local and national level.

The Development Board’s leadership and vision also formed the Young Friends of Cardinal Glennon to help introduce college students and recent college graduates to the lifesaving mission of SSM Health Cardinal Glennon.

The Development Board is actively recruiting individuals who are dedicated to working toward promoting the welfare of children of St. Louis within the image of SSM Health Cardinal Glennon.

For more information on the opportunity to take a step towards supporting the mission of SSM Health Cardinal Glennon of “Through our exceptional health care service we reveal the healing presence of God,” call 314-577-5605 or email us at info@glennon.org.

Scoops of Fun 2021 While Scoops of Fun traditionally offers an all-you-can-eat ice cream social at The Magic House Children’s Museum, the ongoing pandemic, group gathering restrictions and social distancing guidelines prompted us to change the format with everyone’s health and safety top of mind. For 2021, the Development Board is bringing Scoops of Fun to the hospital once a month from April–September with sweet treats from local vendors distributed to patients, families and staff.

Support from the Development Board and our generous community sponsors provide a normal activity for families in the hospital while benefiting the Footprints℠ team at SSM Health Cardinal Glennon. Special thanks to our returning sponsors - McBride Homes, Esse Health Pediatrics and American Metal Supply Co., Inc. - for their continued support and a special thanks to The Cup for providing the sweet treats in April to our patients, families and staff.

THANKS to the Development Board for their continuous support of SSM Health Cardinal Glennon Children's Hospital.

President

Jake Eilermann Past President

Joe Stroot Membership Chair

Ben Albers Public Relations Officer

Teresa Braeckel Secretary

John Vitale Young Friends Leader

Serafina Nicolais Development Board Members

Liz Barrett Hannah Castellano Jeremiah Dellas Patrick Donlan Dana Ferrick Jake Fusia Lacie Good Mike Gregoritsch Marcy Handlan Zach Kratofil Rick Kuhlman Brian Lamping Chris Leonard Holley Maher John Marino Anna McKee Jeff Meyers, Jr. Adam Morgenthaler Michael Niemann Declan O’Neill Nathan Riner Sami Sagakhaneh Matt Sartori Tracey Swabby Lauren Vandegriffe Patrick VanCleave Stephen Wagner Brandon Wappelhorst Ben Warning

glennon.org Spring/Summer 2021 • 63

EMERITUS BOARD

Members of the Emeritus Board Chair

Douglas A. Ries Emeritus Board Members

Ronald L. Aylward Patrick D. Barron John M. Bruno Julian L. Carr, Jr. James G. Castellano Ralph W. Clermont Harry P. Fabick Richard E. Fister, Sr. Donald J. Gunn, Jr. Michael H. Heinz Edward T. Hempstead Edward D. Higgins Russell H. Isaak Robert F. McCoole, Jr. Robert M. Merenda Jerry E. Ritter

Emeritus Board

e·mer·i·tus /ə'merədəs/ Retired from active service but retaining one’s title as an honor.

F

our years ago, an exciting new chapter began for the SSM Health Cardinal Glennon Children’s Foundation Board of Governors with the establishment of the Emeritus Board.

This endeavor was created to honor former board members and to continue their engagement with the hospital.

Retiring and former members with at least nine years of board service would be invited to continue their service in an advisory capacity through this newlyformed Emeritus group.

Chaired by Doug Ries, former president of SSM Health Cardinal Glennon Children’s Hospital and current member of the Board of Governors, the Emeritus Board currently consists of 16 former board members – and some past board presidents – whose knowledge, expertise and demonstrated commitment to the children of SSM Health Cardinal Glennon are of great

value and benefit.

“In the past two years, we have added eight to 10 new members to the Emeritus Board, all of whom I know very well from their past years on the Board,” says Doug Ries, Emeritus Board Chair. “I consider all of them friends and colleagues, and I have the utmost respect for each one. They provide the atmosphere for thriving and challenge with new insights into our mission. I am confident that the mentorship provided will continue to be a welcome addition to the Board of Governors.”

Last fall, the Emeritus Board welcomed four new members as they retired from the Board of Governors: Mike Bruno (2001-2020), Ed Hempstead (1987-2020), Ed Higgins (1996-2020) and Jerry Ritter (1978-2020). We applaud you all for your decades of board service and your leadership in championing our mission.

EMERITUS MEMBER SPOTLIGHT

Jerry E. Ritter

Celebrating 42 Years of Service Jerry had an illustrious career at AnheuserBusch that spanned 28 years until his retirement in 1996. He and wife, Peggy, are involved in a long list of nonprofits in St. Louis, but they are not driven by a need for recognition or acclaim.

They give out of gratitude and humility, with the goal of helping make St. Louis a better place.

Apart from their daughters' schools, one of the first charities the Ritters were involved with in St. Louis was SSM Health Cardinal Glennon Children's Hospital. Peggy served on the Glennon Guild for many years, as well as the planning committee for the Bob Costas Benefit to support cancer services at SSM Health Cardinal Glennon. Jerry joined the foundation's Board of Governors in 1978, serving as President of the Board from 2000 to 2002.

He formally retired from the Board of Governors in 2020 as one of the longest-serving members of the Board. Thank you, Jerry and Peggy, for your remarkable generosity and your humble devotion to the children and families served by SSM Health Cardinal Glennon.

64 • SSM Health Cardinal Glennon Children’s Foundation

Jerry and his wife, Peggy, at Glennon Glow 2019

SPOTLIGHT

GLENNON FRIENDS

/ GLENNON FRIENDS

celebrates the faith, commitments and generosity of our supporters.

SPOTLIGHT

Margaret Jenks

M

argaret Jenks keeps a picture of a large, fluffy dog on her kitchen table. She has always loved dogs. And kids, too.

Which is how she became friends with that dog, whose name is Thor.

Thor is a facility dog who joined the staff at SSM Health Cardinal Glennon Children's Hospital in 2019. A Labrador Retriever who is nearly four years old, he was bred, raised and trained from puppyhood to become a pediatric hospital facility dog.

Providing comfort and motivation to kids, parents and caregivers is his job description.

Mrs. Jenks combined her affections for dogs, children and philanthropy when she made a contribution to SSM Health Cardinal Glennon Children's Foundation that brought Thor to the hospital.

"I strongly believed that Thor could be so helpful for children as they are dealing with illness," Mrs. Jenks said. "The comforting presence a dog can provide is something special. I was confident that Cardinal Glennon would successfully implement this program."

"My grandmother has always loved dogs," said Jenks Coggin, her grandson. "She also is very charitable. That is why she was part of the program that was started for Thor. She believes in Cardinal Glennon and everything they do there. She is very religious and sees

Margaret Jenks and Thor

Glennon's principles and what it does for people in need."

Mrs. Jenks was born in Alton, Ill., and grew up in St. Louis. "She ran a family-owned mining business before she retired. Her success as a business woman was very impressive in her time," Coggin said.

Her philanthropic efforts have supported her church, religious charities, schools and educational programs, he said. "Her desire to help younger generations is her primary focus of charitable giving."

While Coggin grew up in Virginia, he often visited his grandmother in Missouri. "I always remember going to her house and seeing dogs running around. One time a stray dog gave birth to a

litter of puppies on her farm. She took in all five of them."

Facility dogs, such as Thor, and their handlers are used for goal-oriented interventions with patients, such as encouraging them to participate in therapies and procedures. They also provide stress-relieving companionship and comfort to parents and caregivers.

Thor came to SSM Health Cardinal Glennon from Duo Dogs, a nonprofit organization that provides facility dogs, therapy dogs and service dogs to individuals with disabilities or other special needs. The dogs are selected for temperament, behavior and personality and undergo two years of training that stresses obedience.

Thor and his team, food, medicine and grooming are supported by contributions to the SSM Health Cardinal Glennon Children's Foundation.

"My grandmother knows of the joy a dog can bring to a kid's life," Coggin said. "It is really incredible what these dogs do. She sees that the kids at Glennon get a lot of emotional support from Thor. It brings a great deal of satisfaction and joy to her to know what he is doing.

"She loves the hospital and its mission."

glennon.org Spring/Summer 2021 • 65

GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT

George Weber

G

eorge Weber was standing in the kitchen and talking on the telephone 21 years ago. Suddenly he suffered a major stroke. He remembers dropping the phone and then...nothing.

Initially his doctors were concerned that he might not recover, but he did. Weber continues to undergo rehabilitative therapy, which has allowed him to regain much of his ability to speak and limited ability to walk.

"He used to ask, 'Why did God do this to me?'" recalled his sister, Leogene. "He decided, 'So I could come back and help people.'"

Weber, second-youngest of eight children, grew up on one of the family farms established in St. Charles County in the middle of the 19th century, when waves of immigrants came to the U.S. from Germany. St. Charles County, previously settled

by Spanish and French pioneers, became largely German.

Weber's home was built by his father. Nearby is the home built by his great-grandfather, Peter Weber, in 1849.

"This was good farmland," Weber said. "It's located between two rivers (the Mississippi and the Missouri) so it had rich soil."

The Webers enjoyed plentiful

George Weber and his siblings

days working and playing in the fresh air, Leogene said. "In the winter we went ice skating on the pond. We had a beautiful life here."

The farm produced corn, soybeans, eggs and sometimes wheat and strawberries to sell.

The family also raised its own vegetables and processed its own pork and beef. Home-made butter, buttermilk, jams, jellies, pies and sausage were enjoyed on the large round table in the kitchen.

"The table is 100 years old," Leogene said. "A guy in St. Charles made it. My grandpa bought it for a $5 gold piece."

Weber had five brothers and two sisters. Six other siblings died at birth.

Faith was an important part of the family's life. The Weber children attended mass and school at the St. Charles Borromeo Parish about five miles away in the city of St. Charles.

The original wooden church the third Catholic parish established west of the Mississippi River - was built in 1791 when the region was controlled by Spain. The church was named for the patron saint of the Spanish king.

Much of the current church was consecrated in 1872. A wind storm destroyed much of it in 1915.

The cornerstone for its reconstruction was placed in 1916 by then-Archbishop John Glennon, for whom SSM Health Cardinal Glennon Children's Hospital was named in 1956. The church's baptismal font was donated by the Weber family.

Weber volunteers at several monthly support groups for survivors of strokes and head injuries.

With a sibling doing the

66 • SSM Health Cardinal Glennon Children’s Foundation

George Weber

driving, he continues his long-time practice of visiting neighboring families to drop off fruits and vegetables – and candy for the kids.

He never married but there were always lots of children around the farm from his extended family. "I always liked kids," he said.

Weber's niece was a patient at SSM Health Cardinal Glennon. "She had heart troubles when she was born. They operated on her then and would wait until she was three years old to operate again," he said.

"The day before her operation we walked down the field to the pond together. She went through the operation good," he said, but she died from complications following the procedure. "That was 34 years ago."

He recently decided that another way to "come back and help people" would be to make a substantial gift in her memory to SSM Health Cardinal Glennon Children's Foundation.

"I wanted to do something for kids. Her parents knew the people at the hospital did all they could for her," he said. " I know they take good care of kids."

Why I Give » Cardinal Glennon treated my brother's leukemia when he was five years old and he received excellent medical attention and care.

I give to Cardinal Glennon because of the amazing doctors and nurses that treated me almost 35 years ago.

What Cardinal Glennon did for both me and my family can’t ever be repaid, so I donate for all children to receive the care I did many years ago.

Ryan Welch

Michelle Bockhorst with her daughter, Marissa, at SSM Health Cardinal Glennon

My daughter, Marissa, spent most of her life at Cardinal Glennon since birth. She had a heart transplant weeks after her birth.

The care she received, there are no words to describe it.

The team at Glennon are our heavenly angels and a very special group of people with lots of heart and soul for everyone they come in contact with.

Ryan Welch

Without these services, I might not have ever known my brother, because I was very young when he was diagnosed.

I was blessed that my brother made a full recovery. I give back to the hospital knowing that my support will be going to help a child like my brother.

Oliver Doerr

We were blessed to have 15 years with our daughter until her passing on 1/20/2011. I donate every year in her memory.

We will always be blessed by each and every one of the staff there.

Michelle Bockhorst

Oliver Doerr and his brother

glennon.org Spring/Summer 2021 • 67

GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT

Hot, Hot, HOT! Pinball Enthusiasts Raise Funds to Donate HOT WHEELS™ Pinball Machine

A

former patient at SSM Health Cardinal Glennon Children’s Hospital has taken his passion for pinball to new heights by orchestrating what turned out to be a global fundraising effort to donate a pinball machine to the hospital. St. Louisan Jason Fowler and his friend, Matthew Koenen, were hosts of the wildly popular Slap Save Pinball podcast, which drew an international audience before the pair ended the show late last year. Among the duo’s last efforts was one in which they asked listeners to help raise funds to place a pinball machine at SSM Health Cardinal Glennon.

“We had listeners from all over the United States as well as Australia, Europe and South Africa,” says Fowler. “We were hoping to raise up to $6,000 including the sale of one of my own machines, but the listeners were so fantastic that we raised almost $12,000!”

Fowler worked with Project Pinball Charity, a nonprofit

organization based in Florida that places pinball machines in children’s hospitals and assisted living facilities across the country. To date, 53 pinball machines have been donated to hospitals in 24 states. "At SSM Health Cardinal Glennon, Project Pinball delivered a very cool HOT WHEELS™ machine, much to the delight of kids and their families.

"Pinball is perfect for hospital settings because it has therapeutic properties that can be found through joyous physical play that happens while standing in front of a pinball machine,” says Daniel Spolar, one of the founders of Project Pinball Charity. “Pinball machines have a wonderful distracting characteristic that can be enjoyed not only by the patients, but their siblings and the whole family."

Fowler says the effort to bring a pinball machine to the hospital was his way of paying it forward. At age 10, he was rushed to SSM Health Cardinal Glennon and diagnosed with type I diabetes. Scared to learn about giving himself shots, he says the nursing staff and his doctor radiated positivity and caring. His parents, especially his dad Kerby, also rallied around. After Fowler was taught how to give injections into an orange, his dad rolled up his sleeve

The new HOT WHEELS™ pinball machine at SSM Health Cardinal Glennon

68 • SSM Health Cardinal Glennon Children’s Foundation

Jason Fowler and his nephew in Fowler's home arcade

and told his son to give him an injection (of plain saline) to practice on a real person. “Over the years, control of my diabetes has been stellar. I credit that to the hospital team that taught me everything and to the confidence that my dad instilled in me that day.”

Fowler, whose family started Fowler’s ZX gas station in Richmond Heights, Mo., says the HOT WHEELS™ pinball machine honors his father with a plaque on the side of the machine. “The connection isn’t so much with pinball as it is an opportunity to honor my dad and mimic his generosity in life. He passed away three years ago from complications due to Alzheimer’s, but he was my best friend and I still think of him every day.”

Fowler has volunteered to serve as the regular technician to keep the machine in good operating condition. “I’ll take care of it as well as Cardinal Glennon took care of me,” he says. “It’s a way to say thank you to the hospital and honor not only my dad but the many pinball enthusiasts around the world who listened to our podcast and contributed so that children can get away from their worries and find joy in playing a game.”

SPOTLIGHT

/ GLENNON FRIENDS

SPOTLIGHT ST. VINCENT REDBIRD RUNNERS

St. Vincent Redbird Runners Raise Nearly $600 for the Hospital

S

t. Vincent de Paul School in Dutzow, Mo., is a small, Catholic grade school with a big heart.

Early in 2021, Mark Spann, a staff member at St. Vincent de Paul, was looking to add a higher purpose to the school’s weekly running group and settled on fundraising for SSM Health Cardinal Glennon Children’s Hospital. “We needed a purpose beyond just logging miles,” said Spann, “and when I looked around, I realized the mission of Cardinal Glennon was a perfect fit for the mission of our Catholic elementary school.”

Spann quickly set up an online fundraising page for the students and soon donations were pouring in.

To date, The St. Vincent Redbird Runners have raised nearly $600 through their page and have helped spread the mission and impact of SSM Health Cardinal Glennon.

According to Spann, his favorite part of the program is watching his students get excited about their miles, knowing that they are helping other kids through their efforts. “It’s one more opportunity

to give them the experience of seeing beyond themselves and their community and reminding them of their blessings and how they can use those blessings to help other people,” he says.

We are grateful to the students and staff at St. Vincent de Paul School for their continued support.

Want to start your own fundraiser to support SSM Health Cardinal Glennon? Visit glennon.org/fundraise today to learn more about our online fundraising opportunities and how you can help make a difference for children in need.

The St. Vincent Redbird Runners

SPOTLIGHT GAMERS OUTREACH

Gamers Outreach Delivers Xbox GO Karts to SSM Health Cardinal Glennon

C

hristmas came early at SSM Health Cardinal Glennon Children's Hospital with the arrival of two brand new Xbox Series X video game consoles. The consoles came to us through Project GO Kart at Gamers Outreach Foundation, a nonprofit organization that seeks to provide equipment, technology and software to help kids cope with their time in the hospital.

Through two separate partnerships with Love Your Melon and actor Gal Gadot, Gamers Outreach was able to deliver two of their customized Xbox GO Karts to SSM Health Cardinal Glennon just in time for the holidays! Each GO Kart is a portable video game kiosk that is specifically designed to be used in a hospital setting and will help our Child Life Team provide bedside recreation to our patients.

We are incredibly grateful to Gamers Outreach and their partners for their support and we cannot wait to see all the smiles each GO Kart brings to our patients’ faces!

Xbox GO Kart brings a smile to Glennon Kid Barry

glennon.org Spring/Summer 2021 • 69

GLENNON FRIENDS /

SPOTLIGHT

SPOTLIGHT JIMMY WILLIAMS

Jimmy Williams Brightens the Holidays for Patients and Families

B

ack in 2019, Jimmy Williams spent the holiday season patiently waiting for a new heart at SSM Health Cardinal Glennon Children’s Hospital. Just before Christmas that year, Jimmy finally received his heart, which he playfully dubbed ‘Timmy The Ticker.’ Fast forward to December 2020 when Jimmy and ‘Timmy’ returned to SSM Health Cardinal Glennon, but this time they came with gifts to help brighten the holidays for other patients and families.

Jimmy Williams Jimmy and his friend, Kate, collected donations in their communities to say thank you to the hospital that saved his life.

Jimmy’s mom, Shana Williams stated, “Jimmy is always looking for an opportunity to give back to Cardinal Glennon. When the opportunity came for him and Kate to bring joy to the children who would be spending the holiday season at the hospital, he

Jimmy and Kate with their donation

literally jumped at the chance,” said Mrs. Williams. She added, “He told me on the way to deliver the gifts: ‘Cardinal Glennon saved my life, mom. There’s nothing I wouldn’t do for them.’”

We are grateful to Jimmy and his family for their continued support of our mission. It’s a joy to see Jimmy continue to thrive and grow with his new heart!

SPOTLIGHT EMPLOYEE GIVING

Annual iCare, iGive Employee Giving Campaign

E

ven with the uncertainty and challenges that our health care workers overcame in the last year, our employees remained a caring, compassionate and committed work family to each of our SSM Health ministries. The annual iCare, iGive employee giving campaign serves the SSM Health St. Louis region and gives employees the opportunity to support the areas where they know it matters most.

At SSM Health Cardinal Glennon Children’s Hospital, funds like Care for Caregivers, Child Life, Footprints℠, Social Services, the Sr. Noreen McGowan Nursing Education Fund and the Children’s Fund all depend on these annual contributions. Employees choose to make a onetime gift or have a portion of their paycheck deducted each pay period to support what they are passionate about. Although the promoted giving window was April 5 through April 16 this year, employees may still sign up throughout the year. Every gift - no matter the amount - makes an 70 • SSM Health Cardinal Glennon Children’s Foundation

enormous difference in the lives of those we serve. Thank you to everyone who has already participated in the 2021 iCare, iGive campaign.

If you would like to make a donation, please visit icareigive.org.

WHERE ARE THEY NOW?

Where Are They Now? Michael Burke / THEN: 1-year-old cystic fibrosis patient with progressive lung disease

now 51-year-old Ironman athlete

THEN

W

hen Michael Burke was a 1-year-old patient at SSM Health Cardinal Glennon Children’s Hospital, his parents were told he would be fortunate to live until he was 7 due to progressive lung disease caused by cystic fibrosis. Now 51, Burke plans to bicycle 5,000 miles this year, a thousand more than last year.

“Cardinal Glennon set me up for every wonderful thing that I have been able to do and live decades beyond my life expectancy,” he said.

“I’ve been able to run nine marathons, 20 half-marathons, a 70.3 Ironman, travel the country and be married.

The hospital made that possible.”

Burke was an SSM Health Cardinal Glennon patient from 1971 until he transitioned to the adult cystic fibrosis (CF) program at Saint Louis University Hospital at the age of 22. His physician was the late Tony Rejent, MD, a pioneer in CF care, founder of the Cystic Fibrosis Center at SSM Health Cardinal Glennon and its director for 40 years.

Also legendary among generations of patients was Mary Ellen Judge, the pediatric nurse practitioner who retired in 2008 after 48 years at the hospital and 32 in the CF Center. She and Burke have stayed in touch.

NOW

Following Burke’s life has been “thrilling,” she said. “I saw quantum leaps and there have been more than quantum leaps since I left.”

“You would think a hospital would be a place you would want to get away from, but it wasn’t like that,” Burke said. “I played in the hallways.

The nurses were amazing. It was pleasant.”

CF is a genetic disease that causes mucus in some body organs to thicken, causing persistent lung infections and liver disease. Mucus impairs the pancreas’ release of enzymes that help the body absorb nutrients, resulting in malnutrition.

About 1,700 genetic defects have been linked to CF. About 30,000 Americans are living with the disease and 1,000 more are diagnosed annually, according to the CF Foundation.

When the CF Foundation was formed in 1955, there were no treatments for CF and its patients rarely lived long enough to start school. Today more than half of CF patients are adults.

Gradual advancements in care carried Burke to the age of 31, when he decided to aggressively push the disease’s limits.

“I started running. My brain likes to go big. I wanted to do the hardest thing I could think of, and that was

to run a full marathon. I wanted to check CF where it hurts, mentally and physically,” he said.

As he “stacked on miles,” he felt stronger and coughed less and less as the exercise assisted other treatments in clearing his lungs.

“Running got me mentally focused on something positive and physically challenged me to take my medicine better, do the treatments better and go to the doctor more often,” he said.

Burke pushed through a running career that included marathons (26.2 miles), half-marathons (13.1 miles) and a 70.3-mile Ironman triathlon – a one-day race consisting of a 1.2-mile swim, 56-mile bicycle race and 13.1mile run.

Life-changing treatment advances continued to arrive, especially CF modulators that correct a malfunctioning protein caused by genetic defects.

“My lung capacity in 2001 was 80 percent,” he said. “In 2019 it dipped to 68 percent. In 2020 my lungs returned to 80 percent.” He credits the recovery to the CF modulators and the early care he received.

Burke, now a motivational speaker and executive coach, credits his early care at SSM Health Cardinal Glennon for preserving much of his lung function until the modulators came along. Also, he said, “My mom and dad did my postural drainage therapy every night for years. They never missed a doctor’s appointment or all the pills.”

Before his father died, Burke asked him to describe his experiences at the hospital.

“My dad said there was one word to describe Mary Ellen – ‘love.’ For an old-school guy to say that, I think it speaks volumes. They knew we could count on her.” glennon.org Spring/Summer 2021 • 71

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Dear Friends,

S

hortly after my mom and dad, George and Vickie, exchanged vows in the fall of 1963, Dad announced that he wanted to change careers.

He wanted to start his own company and decided to purchase his first gas station in 1965. Remember, back in the 60s and 70s, service stations (as they were called) offered Full Service, which meant my dad greeted every customer, pumped their gas, washed their windshield and made change with the old-fashioned change-maker on his belt.

As the business grew and more stores were acquired, our family grew as well. My brother Greg was born in 1966 and I was born in 1971. The business and us boys kept them very busy, but dad made time to coach, and even sponsored our little-league baseball teams. Dad was excited to bring us boys into the business, often putting us to work around the stores on weekends picking weeds, emptying trash and cleaning up. As Greg and I grew, we took on greater responsibility, and after our college days, we worked full-time in the family business.

When my brother Greg passed in 2002 after a long battle with Crohn’s disease, Dad and Mom turned their focus on helping find a cure for this disease, having organized an annual golf fundraiser in Greg’s memory, which has raised over $1,000,000 for Crohn’s and Colitis education and research.

George and Vickie Eble with Granddaughter, Madison Eble (Greg’s Daughter)

Petro-Mart supports Homers for Health in convenience stores around St. Louis

Today, they have expanded their charitable efforts and created The Greg Eble Memorial Foundation to honor Greg.

That foundation now supports several local charities, including Crohn’s and Colitis Foundation and SSM Health Cardinal Glennon Children’s Hospital through the Homers for Health campaign.

Since 2015, Petro-Mart has raised more than $180,000 to benefit the kids and families at SSM Health Cardinal Glennon.

Thank you,

Grant Eble, President Western Oil

Non-profit Org. U.S. Postage PAID Saint Louis, MO Permit No. 2412

Children’s Foundation Published by SSM Health Cardinal Glennon Children’s Foundation 3800 Park Avenue St. Louis, MO 63110 314-577-5605 • 1-800-269-0552 email: info@glennon.org

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