STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION SPECIAL EDITION
IN MY BACKYARD
HE
YACHIMEC
IS
AUTO GROUP TH
MENDING HEARTS
Behind the scenes at the Stollery’s new pediatric cardiac intensive care unit
5
WAYS TO SUPPORT YOUR CHILD’S MENTAL HEALTH
BY
Expanding care for rural families
D
IMPROVED ACCESS
ROES I S
ONSORE
FOR PORTER STANLEY, THE FUTURE IS FULL OF HOPE
F
SP
Looking FORWARD
ISSUE O
SPRING 2018
DISCOVER THE LEADER IN YOU GET INSPIRED. GET ENGAGED. MAKE A DIFFERENCE.
#SYNIMPACT
OCTOBER 27 Only $20 to register SIGN UP TODAY 2 STOLLERYKIDS.COM/YOUTHNETWORK HEROES MAGAZINE | SPRING 2018
Contents
SPRING 2018
32
DEPARTMENTS
6 FOUNDATIONS Year after year, the Alberta Royal Purple Lodges Association, ATB’s Teddy for a Toonie campaign, the Stollery Family Day Classic and the Mighty Millions Lottery all help to support Stollery kids.
8 STOLLERY SUPERSTAR Mckenna O’Donnell’s family celebrated her first birthday with a party to raise money for the Stollery Children’s Hospital Foundation.
9 EVENTS Mark your calendars for these upcoming fundraising activities.
24 TECH FILES
COVER PHOTO BY COOPER & O’HARA PHOTOGRAPHY
Funded by the Stollery Children’s Hospital Foundation, these three pieces of vital equipment reach into backyards across Western Canada.
26 TEAMWORK
32 INNOVATOR Dr. Michael Hawkes has devoted his career to improving outcomes for children battling some of the world’s biggest health challenges.
34 SPECIALIST As a nurse practitioner in the Stollery’s Pediatric Chronic Pain Program, Kathy Reid brings education and hope to teens from all over Western Canada who are living with chronic pain.
37 BIG GIVE Meet siblings Jack and Lily Pinchuk, the Stollery’s 2018 Children’s Miracle Network Champions, presented by Walmart Canada.
41 PAYING IT FORWARD
FEATURES
10 BOY WONDER Born with a rare craniofacial syndrome, four-year-old Porter Stanley is a source of inspiration both to his family and to his dedicated medical team at the Stollery Children’s Hospital.
The Stollery’s neonatal intensive care unit at the Royal Alexandra Hospital is now home to a highly specialized training centre.
Students from Cold Lake High School found inspiration and motivation at the Stollery Youth Network’s first-ever You(th) Make Impact summit.
30 FROM THE HEART
42 REFLECTIONS
15 HELPING HANDS TO MEND HEARTS
Cindy and Monte Waronek of Drayton Valley, Alberta, show their gratitude to the Stollery Children’s Hospital with a generous annual donation.
Long-time donor and volunteer Robyn Eeson shines a light on the important work being done by the Stollery Women’s Network.
With the support of Foundation donors, the Stollery Children’s Hospital has just opened its brand-new pediatric cardiac intensive care unit.
15 20 EXPANDING STOLLERY CARE FOR RURAL ALBERTA A neonatal intensive care unit will soon be added to the Sturgeon Community Hospital, allowing premature babies in the community to receive the Stollery care they need, right on-site.
22 MENTAL HEALTH AWARENESS Five ways to understand and support your child’s mental health.
STOLLERYKIDS.COM
3
SPRING 2018 • VOL 6 • NO. 1
STOLLERY CHILDREN’S HOSPITAL FOUNDATION
It Takes Trust to Transform Children’s Health
charities and non-profits in Canada
200+
accredited
Return undeliverable addresses to:
Josie Hammond-Thrasher
Stollery Children’s Hospital Foundation 800 College Plaza, 8215-112 St. NW,
PRESIDENT & CEO
Edmonton, Alberta T6G 2C8
Mike House MBA, ICD.D, Stollery Children’s Hospital Foundation
We’re proud to share with you our recent accreditation with the Imagine Canada Standards Program Trustmark. This designation shows our commitment to the highest standards of accountability, transparency and governance.
170,000
EDITOR
23
in Alberta
5 areas of excellence: Board governance Financial accountability & transparency Fundraising Staff management Volunteer involvement
The Standards Program Trustmark is a mark of Imagine Canada used under licence by the Stollery Children’s Hospital Foundation.
THIS ISSUE OF HEROES IS SPONSORED BY
REDPOINT MEDIA & MARKETING SOLUTIONS
BOARD OF TRUSTEES CHAIR
Editorial Director Jill Foran
Richard Kirby LLB, MBA, ICD.D,
Art Director Steve Collins
Midnight Integrated Financial Inc.
Graphic Designer Rebecca Middlebrook Proofreader Alex Frazer-Harrison
VICE-CHAIR
Contributors Colleen Biondi, Elizabeth Chorney-Booth,
Lindsay Dodd B.Comm., MBA, ICD.D, Doddcor Ltd.
Glenn Cook, Cooper & O’Hara Photography, Caitlin Crawshaw, Jennifer Dorozio, Robyn Eeson,
Dr. Jodi L. Abbott, ICD.D, NorQuest College
Rob Hislop, Robbie Jeffrey, Lisa Kadane, Fabian Mayer,
Laurie Anderson, CPA, CMA, One Properties
Alexis Millar, Karin Olafson, Martin Schuldhaus,
Richard Balan, RTA Holdings Ltd.
Riyaz Sharan, Julia Williams
Kelly Blackett, Canadian Western Bank Jeff Bryson, The Stollery Charitable Foundation
Published for
Jonathan Chia, Maclab Properties Group
Stollery Children’s Hospital Foundation
Jacquelyn Colville, CA, CPA, ICD.D
800 College Plaza, 8215-112 St. NW,
Dr. Alf Conradi, MD, FRCPC, Stollery Children’s Hospital
Edmonton, Alberta T6G 2C8
David G. Filipchuk, P.Eng., PCL Constructors Inc.
stollerykids.com
Noah Jones, BA, CFP, CLU, Vanta Group Rod MacKenzie, P.Eng., Legato Resources Ltd.
Published by
Stephen Petasky, The Luxus Group
Redpoint Media & Marketing Solutions
Ryan Pomeroy, Pomeroy Lodging LP
100, 1900 11 St. S.E.
Ian Reynolds, QC, ICD.D, Bennett Jones LLP
Calgary, Alberta T2G 3G2
T. Marshall Sadd, Lloyd Sadd Insurance Brokers
Phone: 403-240-9055
Shawna K. Vogel, BA, LLB, ICD.D, Katz Group
Toll free: 1-877-963-9333
Cory D. Wosnack, Avison Young
Fax: 403-240-9059
Dr. Greg Zeschuk, Blind Enthusiasm Group
info@redpointmedia.ca
EX OFFICIOS
President & CEO Pete Graves
Dr. Richard Fedorak, University of Alberta
Group Publisher Joyce Byrne
Dr. Susan Gilmour, University of Alberta
Publisher Pritha Kalar
and Stollery Children’s Hospital
Client Relations Manager Sandra Jenks
Dr. Christine Kyriakides, Stollery Children’s Hospital
Production Manager Mike Matovich
Christine Westerlund, Stollery Children’s Hospital
Audience Development Manager Rob Kelly
About the Stollery Children’s
Copyright 2018 by RedPoint Media & Marketing Solutions.
Hospital Foundation
No part of this publication may be reproduced without the
The Stollery Children’s Hospital Foundation funds
express written consent of the publisher.
specialized programs, equipment, training and research
Publications Agreement #40012957
at the Stollery Children’s Hospital to give the sickest kids the best chance, anywhere in the world, to live a long and healthy life.
All fundraising totals are listed as gross unless otherwise specified. For information on fundraising targets and expenses, please call the Foundation at 780.433.5437.
4
HEROES MAGAZINE | SPRING 2018
welcome from the president & ceo
MIKE HOUSE, PRESIDENT & CEO, AT THE 2017 MIGHTY MILLIONS LOTTERY SHOW HOME WITH STOLLERY KID KAIA, 6.
The future of children’s health is in your backyard
PHOTO BY ROB HISLOP PHOTOGRAPHY
T
his issue of HEROES is themed around our newest and most exciting campaign yet: In My Backyard. You’ll see examples of the Stollery’s growing network of care that exists in backyards across northern Alberta thanks to the support of people like you in communities like yours. Our cover kid, Porter, is a prime example. Porter is one of only 30 or so people in the world with his health condition, and his family from Onoway knows he likely wouldn’t be here today without the expertise that exists at the Stollery. We hear from families all the time about how fortunate they feel to have the Stollery in their backyard. In fact, we recently surveyed donors and the general public in communities like Red Deer, Grande Prairie and Fort McMurray and heard overwhelmingly that children’s health care is a priority.
That’s why we invested in the Stollery’s new pediatric cardiac intensive care unit that, since opening last fall, draws onethird of its patients from Edmonton and two-thirds from referrals across Western Canada. That’s why we’re investing in a new neonatal intensive care unit at the Sturgeon Community Hospital, set to open in 2019. And that’s why we’re investing in pediatric mental health like never before, including partnering with government to build a new child and adolescent mental health building in downtown Edmonton. The health of our province starts with the health of its children. Thank you for your support as we build the future of children’s health, together. MIKE HOUSE, MBA, ICD.D President & CEO, Stollery Children’s Hospital Foundation
92%
of northern Albertans surveyed think the Foundation’s support of the Hospital is vital to the health of their community.
88%
believe the Foundation should work closer with government to improve children’s health care.
84%
support expanding the Stollery’s network of care to give kids in their community the best health care possible closer to home.
68%
would support a government decision to invest in a new, stand-alone Stollery Children’s Hospital in Edmonton.
STOLLERYKIDS.COM
5
ALBERTA-WIDE
COMMUNITY COMMITMENT We take a closer look at four inspiring fundraising initiatives BY FABIAN MAYER
Being of Service Lodge in Viking, Alberta, around 90 minutes southeast of Edmonton. She says the organization’s mandate to improve the lives of children goes back to its 1914 founding in Vancouver, and she credits the fundraising successes to “our friendships and the fact that we are helping kids.” Beverly Sawchuk, a senior manager with the Stollery Children’s Hospital Foundation’s community initiatives team, says the money donated by the Royal Purple Lodges
has gone toward programs that improve family-centred care, state-of-the-art pediatric equipment, innovative research to discover new treatments and cures for child-health issues and
subspecialty education to help train doctors. “The fact that they have donated more than $100,000 shows that they’ve been able to make an impact in those areas,” says Sawchuk.
The Stollery Family Day Classic YOUNGSTERS AGED seven to 14 from around Alberta came together in Edmonton this February to play hockey and raise money for a hospital that has directly treated many of them. The fourday Stollery Family Day Classic is held every year over the Family Day weekend, and this year’s event raised more than $395,000 for the Stollery Children’s Hospital Foundation. Tournament founder Steve Serdachny spent 12 years with the Edmonton Oilers as a skating coach and now has his own power skating company in the city. He says he founded the tournament as a way to give back to both the game of hockey and to the community. “I came up with the concept of a tournament that would, first and fore-
6
HEROES MAGAZINE | SPRING 2018
most, create awareness for the Stollery Children’s Hospital,” says Serdachny. “It also activates youth to think about how fortunate they are to be healthy and to be able to give back to others.” Money is raised during the tournament through raffles, 50/50 draws and a silent auction. But much of the more than $2.6 million raised in the eight years since the tournament began comes from the players themselves. The 82 participating teams fundraise in their communities during the weeks and months leading up to the tournament. “A lot of these kids have stories [about the Hospital], whether they’re personal ones or through their family, so it’s really great to see them getting behind the cause and helping kids like themselves,”
says Whitney Masson, senior manager of special events at the Stollery Children’s Hospital Foundation. The tournament has become a signature event on the minor hockey calendar; more than 450 teams from around the province applied to take part this year. Serdachny has a simple explanation for the tournament’s success. “Hockey is more than just a game. In Canada, it’s a part of our culture,” he says. “I think that hockey is an excellent vehicle for creating good people, not just good hockey players.”
PURPLE LODGES PHOTO BY VIC LIARD; STOLLERY FAMILY DAY CLASSIC PHOTO BY JOHN HARDEMAN
F OR THE 12TH consecutive year, the Alberta Royal Purple Lodges Association has donated a large portion of its annual fundraising proceeds to the Stollery Children’s Hospital Foundation. The service club has 29 lodges spread across Alberta. Throughout each year, they raise money by hosting raffles, silent auctions, bake sales and other events. Since 2016, the club has donated more than $102,000 to the Foundation. Dawn Hodgsen is secretary for the Royal Purple
foundations Teddy Bears for a Cause EVERYBODY REMEMBERS their childhood teddy bear; it’s hard to think of another toy that brings more comfort to children. With the help of ATB, the teddy is also supporting the Stollery Children’s Hospital. ATB’s annual Teddy for a Toonie campaign raises funds for the Stollery, as well as for the Alberta Children’s Hospital in Calgary, throughout the month of May. Customers and employees from the bank’s 173 branches buy the bears, with all proceeds going to the two hospitals. In 2017, the campaign raised $418,500 for the Stollery and helped the Hospital purchase a new CT scanner. Sandra Huculak, ATB’s managing director of corporate social responsibility and community investment, says there is a reason employees are so enthusiastic about the campaign.
“You can run into anybody in this organization and discover they know someone who has been impacted and supported by one of these hospitals,” says Huculak. “We really get behind that opportunity to help make sure these services are available to our team members and customers.” Beyond the bears, individual branches across the province come up with a variety of other fundraising activities throughout the month of May, from food trucks, to paint nights, to yoga classes. According to Kylie Jones, development officer of corporate giving with the Stollery Children’s Hospital Foundation, ATB has raised approximately $9 million over the 18-year life of the Teddy for a Toonie campaign, with $5.7 million going toward improving care at the Stollery. “The commitment of the ATB employees to improving pediatric health care in
Alberta is very admirable,” says Jones. Today, the teddies in the campaign go for about $15 and are available at all ATB branches from May 1 to 31.
MIGHTY MILLIONS LOTTERY PHOTO BY COOPER & O’HARA PHOTOGRAPHY
Lottery Luck WHEN MIKE WOLOWYCK convinced eight of his c0workers to buy tickets for the Mighty Millions Lottery in 2015, he was thinking of it more as a charitable donation than anything else. “Every year we do it, we just sort of think, ‘Hey, we’re giving to the Stollery, it’s a great cause,’ ” says Wolowyck. “We thought maybe we’d win a barbecue or something.” Not only did Wolowyck and his colleagues at Crestwood Apothecary win a barbecue in 2017, they also won a $2.3-million show home to go with it. “When we won the house, it was unbelievable,” says Wolowyck. “People were coming into work and we got
to tell them we won.” Wolowyck and his co-workers have an added connection to the Stollery Children’s Hospital, as their pharmacy does a lot of compounding for Hospital patients. The nine winners decided against moving in together, selling the house and splitting the proceeds instead. They are among many happy winners to take home prizes through the years. “Mighty Millions is one of our largest fundraisers, raising just over $1.7 million last year,” says Karen Faulkner, VP fundraising with the Stollery Children’s Hospital Foundation. “It allows us to direct the funds where they are needed most — programs,
equipment, training and research — to make sure the Hospital has what it needs to stay world-class and attract the best specialists and
researchers to Edmonton.” Tickets for the 2018 edition go on sale in August. Visit mightymillionslottery.com for more information. STOLLERYKIDS.COM
7
stollery superstar
WINNIPEG
GIVING BACK From the Heart
Mckenna O’Donnell had four open-heart surgeries before she turned one. To give back to the Stollery Children’s Hospital, her friends and family raised $3,200 at her first birthday party
B
orn in July 2016 with five complex heart defects and pulmonary hypertension, Mckenna O’Donnell is no stranger to emergency rooms and hospital stays. Within the first seven months of her life, she was flown from her hometown of Winnipeg to the Stollery Children’s Hospital three times to undergo three separate open-heart surgeries. And by February 2017, she was in need of a fourth. “That was the lowest point in her life,” says Darby Turton, Mckenna’s mother, who, once again, travelled with her daughter from Winnipeg to the Stollery for the fourth surgery on Mckenna’s heart. “Her surgeon, Dr. Mohammed Al Aklabi, was out of the country and flew back to Edmonton for her surgery,” Turton recalls. “He told us he wasn’t giving up on her. I’ll never forget when he came out of the operating room: we thought we’d lost her, but he took our hands and told
8
us she was stable. After that, Mckenna was a whole new baby.” Turton and Janzen O’Donnell — Mckenna’s father and Turton’s partner — were informed about Mckenna’s complex heart defects before she was born. They knew that caring for Mckenna would involve travelling from Winnipeg to the Stollery Children’s Hospital, where some of the most difficult pediatric cardiac cases in Western Canada are treated. Mckenna’s cardiologist in Winnipeg, Dr. Dion Pepelassis, connected with the cardiologists and surgeons in Edmonton when Mckenna began to go into minor heart failure at two months old, and the medical teams then worked together to decide on her treatment. After her fourth surgery, Mckenna had to stay in the Stollery’s pediatric cardiac intensive care unit for three months, but her total time spent at the Stollery was much more extensive. Turton esti-
HEROES MAGAZINE | SPRING 2018
mates that, from the time she was born, Mckenna has spent the equivalent of seven months in the Stollery. And, though Turton admits the situation is a parent’s worst nightmare, she says the level of care the family received at the Stollery made everything manageable. So, when Turton learned about the Stollery Superstars youth fundraising program, she knew she wanted to fundraise in honour of Mckenna, and to give back to the Hospital. Turton opted for a Stollery Superstar birthday party, in which guests bring donations in lieu of gifts. At Mckenna’s first birthday party, a backyard barbecue at her home in Winnipeg, her family and friends raised $3,200 for the Stollery Children’s Hospital Foundation. Tannis Peterkin, the youth philanthropy co-ordinator at the Stollery Children’s Hospital Foundation, is always inspired by the contributions that come from Superstars like Mckenna
and their families. In the 201617 fundraising year alone, $263,000 was raised by Stollery Superstars, and $71,000 of this total came from birthday party fundraisers. According to Peterkin, Mckenna is one of the youngest Stollery Superstars to date. “There are only a handful of kids who are involved in fundraising before their first birthday,” says Peterkin, adding that some families continue to collect donations in lieu of gifts at their birthday parties year after year. Turton plans to fundraise for the Hospital into the future. Mckenna will be a Stollery patient again — she will be back for another heart surgery within the next year — and Turton says the birthday fundraiser is a great way to thank the Stollery for all it has done. “They saved my daughter’s life — there’s no other way to put it,” says Turton. “We want to give back to the Stollery any way we can.”
PHOTOS COURTESY OF DARBY TURTON
BY KARIN OLAFSON
events
SAVE THE DATE 23 JUNE
26 AUG
STEP UP TO THE PLATE SLO-PITCH TOURNAMENT
SIMPLY SUPPER LEMONADE STAND DAY
2018
2018
Held at Meadowview Diamonds in St. Albert, this annual slo-pitch tournament is celebrating its 20th anniversary. Local businesses and individual teams, alike, can take part in the one-day event, and all funds raised go directly to the Stollery Children’s Hospital Foundation.
Simply Supper Helps and its youngest volunteers will squeeze some love into the community by hosting its 5th Annual Lemonade Stand Day, where kids can help kids by selling lemonade in their own neighbourhoods.
Learn more at stepuptoplate.com.
Learn more at simplysupper.ca/helps/lemonade-stand-day.
FUN FACT: The popular tournament has lots of extra perks, including 50/50 raffles, children’s activities and fun for the whole family.
Fun fact: In 2017, more than 16,000 cups of lemonade were sold at 265+ stands across the city, raising around $142,000 for the Stollery Children’s Hospital Foundation.
8 SEPT
22 SEPT
ROW FOR KIDS
WHEELS FOR WELLNESS
2018
2018
Get your team together to train for a regatta at Telford Lake in Leduc. Row for Kids is open to those with rowing experience and those without; the Edmonton Rowing Club’s volunteer coaches work with teams to develop or build the skills they need.
Buckle up for the 3rd Annual Wheels for Wellness car rally in support of children’s health and community wellness. Fun for families, friends and co-workers, this event features a variety of epic checkpoints that change each year.
Learn more at rowforkids.ca.
Learn more at wheelsforwellness.ca.
FUN FACT: Row for Kids is a joint fundraiser; 75 per cent of funds raised go to the Stollery, and 25 per cent are donated to the Edmonton Rowing Club (in support of its youth and amateur sport programs). Last year, 15 teams took part.
FUN FACT: Money raised at this event is split 50/50 between the Stollery Children’s Hospital Foundation and the Mental Health Foundation. Last year, Wheels for Wellness raised more than $212,000.
Visit stollerykids.com/events for a complete list of our upcoming events. STOLLERYKIDS.COM
9
ONOWAY
BOY WONDER Born with a rare craniofacial condition, Porter Stanley proves there may be obstacles, but no boundaries, when it comes to what he can do BY LISA KADANE
orine Cunningham held her newborn son Porter for only a few minutes before he was intubated and rushed to the Stollery Children’s Hospital because he was struggling to breathe. But in that moment — unaware of the medical journey that lay ahead — Corine felt only peace, positivity and love. “I looked at him and I just loved him,” says the mother of three from Onoway, a small town northwest of Edmonton. “A feeling came over me that he was going to be okay and he was going to do great things.” Because she herself was recovering from a C-section at the Misericordia Community Hospital, Corine didn’t see her son again until three days later inside the Stollery’s neonatal intensive care unit. The reunion was overwhelming — Porter was surrounded by a team of specialists that was gearing up for his first surgery. An ultrasound at 36 weeks had alerted Corine and her husband, Craig Stanley, that their son’s skull plates were fused together, but it wasn’t until Porter came into the world that the severity of his condition came to light: Porter, now four, was born with Beare-Stevenson syndrome, which his parents were told is a craniofacial disorder with only 30 reported cases worldwide. “Corine and I came to terms with it pretty quickly. It’s such a rare thing that Porter has,” says Craig, who stayed positive through the diagnosis and tried not to show fear in front of Corine. Whenever his wife would get down, Craig would lift her back up and reassure her that everything would be okay.
10
HEROES MAGAZINE | SPRING 2018
“I think mothers always take it a bit harder,” says Craig. Beare-Stevenson syndrome is caused by an inherited or, in Porter’s case, a spontaneous, genetic mutation. Its hallmark feature is craniosynostosis, a condition where the bones of the skull fuse together prematurely (this normally happens in children around age two). Early fusion of the skull’s sutures inhibits brain growth and affects the shape of the head and face. Porter’s craniosynostosis was accompanied by a Chiari malformation, which is when the brain starts growing into the spinal column because it has nowhere else to go; this jeopardizes the spine and motor function. Additionally, his nasal passage was very narrow, which explained why he was having breathing problems in the delivery room. “He was born with a distinctive skull shape called a cloverleaf skull. It’s rare,” says Dr. Vivek Mehta, a Stollery neurosurgeon involved in Porter’s case since his birth. “Your brain is supposed to double or triple in size the first year in life. And the way it does that is the skull gives. If the skull can’t give, the brain is trying to bust out — for lack of a better term — and it’s stuck in the confines of the skull.” To allow Porter’s brain that crucial room to grow, Dr. Mehta performed a craniotomy when the infant was six days old to remove part of the skull at the back of his head. Porter was also born with hydrocephalus (water on the brain), so, at the same time, Dr. Mehta inserted a shunt to drain off the fluid and relieve the pressure. A week after the craniotomy, Porter underwent a tracheostomy. This procedure inserted a tube into his
hero
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
PORTER, PICTURED HERE AT THE AERIAL GYMNASTICS CLUB IN SPRUCE GROVE, RECEIVED A WALKER LAST SUMMER, AND NOW HE’S VIRTUALLY UNSTOPPABLE.
STOLLERYKIDS.COM
11
windpipe to help him breathe. Since his airway was compromised, he underwent another procedure that placed a G-tube to deliver food right to his stomach (doctors were worried he might aspirate his food otherwise). So, at the tender age of 10 weeks old, Porter Stanley could breathe and eat, and his brain could grow, thanks to the team of doctors handling his treatment. But most importantly, his parents stayed by his side to help him thrive. Through the devastation of the diagnosis and their crash-course into the world of care for a medically complex child, Corine and Craig loved their son unwaveringly, and committed themselves to the idea that he would be okay. “It’s a whole world that you hear about. You hear about the Stollery and children who have complications and disabilities. And you think you’re going to have a healthy child. And sometimes it turns out a different way, and you’re never really prepared for that,” says Corine. “Things were so crazy that I don’t feel like I really had time to process everything,” she adds. “I don’t know that you have time to grieve what’s going on. In that moment, we were doing what needed to be done.” Given Porter’s syndrome, he’ll have more hospitalizations ahead of him his entire life, a fact that makes Corine and Craig feel grateful to have the Stollery’s world-class care right in their backyard. At 18 months old, Porter returned to the Stollery for
12
HEROES MAGAZINE | SPRING 2018
what Corine refers to as his “breakthrough surgery.” The 18-hour collaborative surgery between Dr. Mehta and plastic surgeon Dr. Gorman Louie included three procedures at once: a cranio-vault reconstruction to rearrange his entire skull and piece it back together, like a puzzle, to allow his brain to grow; a frontal orbital advancement to create a forehead to protect Porter’s eyes; and a Chiari boney decompression to remove bone around the brain stem to relieve pressure and allow more room for the cerebellum. “The whole idea was to protect neurological function, protect the eyes and then allow the brain to mature and have a fighting chance. Dr. Louie’s job was to correct the deformity as best he could,” says Dr. Mehta. “It was a balancing act.” With such a long surgery to wait and worry through, Corine and Craig occupied themselves by reading Wonder, a book about a boy with a facial malformation who teaches his classmates that who you are is more important than how you look. Even with his big reconstructive surgery, his parents knew Porter would never look like other kids. The book gave them hope that, when he starts school, it won’t matter so much. “Usually children are a little bit afraid of Porter — they don’t know how to act around him at first,” says Craig. “But once they’ve warmed up to him, they treat him like a normal kid.”
hero I CAN’T IMAGINE WHAT IT WOULD BE LIKE TO HAVE A CHILD WITH MEDICAL ISSUES AND NOT HAVE ACCESS TO A PLACE LIKE THE STOLLERY. CRAIG STANLEY
After Porter recovered from the surgery — and two post-surgery infections — the success of the procedures gave the growing family even more hope. “That surgery was life-changing in so many ways,” says Corine. In the months that followed, Porter flourished developmentally. He was soon sitting up on his own, crawling and then standing. When his little sister Paislee, 2, began walking, it motivated Porter to start using his walker to get around. Perhaps because there are so many unknowns surrounding Porter’s syndrome, his parents never set any limitations around what he would — or wouldn’t — be able to do. Walk? Why not! “Nobody really gave us any answers when we asked, ‘Is he going to be able to walk?’ So after the surgery when we saw the surge of development, it was huge,” says Craig. “I always held out hope that he was going to have a fairly normal life. That maybe one day I could get a pair of skates on my kid and he could play hockey. Now he can walk, so I’m hoping for a pair of skates, for sure.” With his big surgery behind him and two younger siblings to contend with (his littlest sister, Delia, is seven months old), Porter is seemingly unstoppable. He’s in his first year of an early intervention preschool program in Edmonton that includes physical, occupational and speech language therapies. He has started using PECS (picture exchange communication system) and sign language to communicate (he can’t vocalize due to the trach that helps him breathe). He horseback rides on his grandparents’ farm, plays outside on the family acreage, participates in Special Olympics, cheers on the Edmonton Oilers with his dad and watches Ellen with his mom. “Porter is such an interesting little character,” says Craig. “I like hanging out with him, goofing around with him and trying to make him smile.” Porter is also well-loved by his community. In October 2016, Corine organized a local fundraiser for the Stollery’s Neurosurgery Kids Fund, which supports neurosurgery patients and their families as they navigate their med-
ical journeys. The town of Onoway rallied behind the family to help raise $25,000. Corine says the fundraiser was a way for them to give back to the Hospital that saved her son’s life and became her home away from home during those rocky early years. “I think that we will forever be in debt to the Stollery. They gave him life and they saved his life on numerous occasions,” says Corine. Craig says their life changed when Porter was born, and they wouldn’t have been able to make it without the support of the Hospital and their “dream team” of doctors. “It means everything. I can’t imagine what it would be like to have a child with medical issues and not have access to a place like the Stollery. You rely on this place, these people, to keep your child healthy,” he says. Porter will return to the Stollery when he’s seven for his largest surgery, a mid-facial advancement that will pull his face forward and expand his airway — and hopefully get him breathing without a trach. In the meantime, the family is looking forward to a few years of calm, free of fear for his health, but full of hope for his future. “I hope that he continues to show everybody who he is. That he continues to flourish and become the fullest Porter he can be,” says Corine. “I hope that he lives as much of a typical life as he can, because we don’t put any limitations on it. We’re rooting Porter on.” Visit stollerykids.com/inmybackyard to learn more about how you can help Stollery kids from backyards across Alberta.
STOLLERYKIDS.COM
13
SOMETHING FUN FOR THE KID IN EVERYONE! Come visit the Stollery Kids Store and let your imagination take flight: 100% of proceeds support the Stollery Children’s Hospital Foundation Find all your Stollery Children’s Hospital Foundation branded items Give us a call and we can deliver a gift to a patient in the Hospital
Visit us on the main floor of the U of A Hospital or call 780.433.7445. Monday to Friday - 9 a.m. to 7 p.m.
Saturday to Sunday - Noon to 5 p.m.
Closed Statutory Holidays
THANK YOU!
Your ticket purchase helped make our 2017 Mighty Millions Lottery a SOLD OUT success. Proceeds are over $1,500,000 and will support some of the most advanced pediatric care in Canada, right in your own backyard. Watch for our 2018 Mighty Millions Lottery launching in August.
Congratulations to all winners!
For a complete list of winners, visit MightyMillionsLottery.com
14
HEROES MAGAZINE | SPRING 2018
THE HUB FOR WESTERN CANADA
pediatric cardiac care
THE STOLLERY’S NEW PCICU.
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
HELPING HANDS TO
MEND HEARTS It took all hands on deck — and $3.1 million from donors — to create the new pediatric cardiac intensive care unit at the Stollery Children’s Hospital BY CAITLIN CRAWSHAW
STOLLERYKIDS.COM
15
THE PCICU PLAY AREA.
JED CALHOUN
RUTTER.
A PARENT’S TAKE
T
hey say it takes a village to raise a child, and no one knows this better than the families of sick kids. It takes a veritable village of health-care experts to care for medically complex kids both in and out of hospital. It also takes enormous community supports — including the generous contributions of donors — to create medical facilities where children can get the care they need. By all accounts, the redeveloped pediatric cardiac intensive care unit (PCICU), which opened this past December at the Stollery Children’s Hospital, is a goldstar example of what a village can do for its kids. Located at the Mazankowski Alberta Heart Institute, next to the Stollery Children’s Hospital, the stateof-the-art unit will care for some of the sickest children from backyards across Alberta and Western Canada. The new space is a far cry from the old unit, a confined, dark space designed in the 1980s that made it difficult for parents to stay at the bedsides of their children. Thanks to more than $15 million in funding from Alberta Infrastructure and
16
HEROES MAGAZINE | SPRING 2018
THE STOLLERY’S NEW PCICU IS BRIGHT AND FAMILY-FRIENDLY.
$3.1 million from generous donor support via the Stollery Children’s Hospital Foundation, the new facility increases the number of beds from 12 to 16 and offers a space that’s family-friendly. Just as the funding of the project has been a group effort, the design of the PCICU incorporated the perspectives of different stakeholders, like health-care workers and families. And while the new unit is near and dear to the hearts of many, it means something a little bit different to each team member who had a helping hand in bringing it to fruition. Following are the perspectives of three of those team members.
After a healthy pregnancy, Karen Calhoun was excited to deliver her second child at the Grey Nuns Community Hospital in 2002. But when doctors discovered her newborn had underdeveloped bowels and a heart murmur, he was sent immediately to the neonatal intensive care unit (NICU) at the Stollery for specialized care. There, her baby was diagnosed with velo-cardio-facial syndrome (VCFS), a genetic syndrome characterized by a cleft palate, heart abnormalities and learning disabilities. It was a shock to Calhoun and her husband, Todd Rutter, and confusing for the couple’s three-year-old daughter, who had expected her parents to come home with a baby brother. Over the next two years, their son, Jed Calhoun Rutter, would undergo numerous surgeries at the Stollery, and the couple logged countless hours at the Hospital. But due to the cramped PICU, which lacked individual rooms for patients or places for parents to sleep, the family had to
JED BABY PHOTO COURTESY OF KAREN CALHOUN
Karen Calhoun, Stollery mom
pediatric cardiac care JED, NOW 15, AND HIS FAMILY.
leave their sick baby at night. After tossing and turning, Calhoun often returned at 3 a.m. to check on her son, terrified he might take a turn for the worse in the middle of the night: “It’s difficult not to be there when your child might need you,” she says. Today, Jed is 15 years old, stable, and will likely never need the PCICU in the future. Still, Calhoun is thrilled that the new unit will now make it possible for other parents to be with their children 24-7, and that it was designed with the experiences of families in mind.
Calhoun became a member of the parent group supporting the design of the Stollery PCICU five years ago, and had an opportunity to share her own experiences and offer insights on design features. She also shared input from the Stollery’s Patient and Family Centred Care Network (working groups made up of family members and medical staff who advise on many aspects of the Hospital’s operations). Now, Calhoun is happy to see the fruits of her labour. There are comfortable couches in every room that fold down to create a single
bed for a family member to stay with their child. There is a cupboard and drawers for caregivers to store their bedding and personal items. Individual rooms offer privacy, and large windows throughout the unit allow for natural light — something she craved deeply during her son’s stay at the PICU. “Now you can see the sunrise and sunset,” says Calhoun. “Just being able to stay connected with the exterior environment is huge.” The PCICU also contains a family lounge area with a kitchen, television, phone-
charging stations and a play area to occupy visiting siblings. The space gives parents an opportunity for much-needed self-care. “If you’re not well-rested or wellfed, you can’t be with your child when you need to be,” says Calhoun, who also helped pick out the artwork and furniture in the lounge and throughout the PCICU. Not every parent can be at their child’s bedside 24-7, but in a welcoming space, “families are better able to be effective members of their child’s health-care team,” says Calhoun. STOLLERYKIDS.COM
17
A DOCTOR’S ASSESSMENT
Dr. Dominic Cave, Medical Director, PCICU After years of planning, the PCICU is a “dream imagined,” says PCICU medical director Dr. Dominic Cave. As a member of the unit’s redevelopment committee, he was involved in the design process from the beginning and worked with the parent group, as well as the architects charged with translating the needs of families and medical staff into design solutions. “We were fortunate to be able to get user and family input on every aspect, all the way to colour schemes and furnishings, which made a big difference,” Cave says. While the previous PCICU at the Stollery occupied a space of the hospital designed for a different purpose, every feature of the new unit has been customized with pediatric cardiology in mind, Cave says. For example, nine of the rooms have laminar air flow to minimize infection risk when invasive procedures are being performed within these rooms. This allows patients to have these procedures within their care space and not require moving to the operating room. In addition, because sleep is critical for children to heal, all of the rooms have sound-dampening structures and speakers emitting pink noise (similar to white noise), as well as amber lighting (rather than blue lighting, which interrupts sleep cycles). But to Cave, the familycentred design is as important as the technological enhancements. “We’ve worked hard to
18
DR. DOMINIC CAVE.
make the space as comfortable as possible, not because we’re nice, but because rested, healthy parents are the best advocates and collaborators in their child’s care,” he says. “This is not a normal environment for a child. Children experience a lot of stress — even post-traumatic stress. The more we can do to normalize the space, the better.”
HEROES MAGAZINE | SPRING 2018
WE’VE WORKED HARD TO MAKE THE SPACE AS COMFORTABLE AS POSSIBLE. DR. DOMINIC CAVE
pediatric cardiac care
The New PCICU
BY THE NUMBERS
9
Rooms with laminar air flow to minimize infection risk during invasive procedures.
16
Beds in the unit, up from 12.
SHEILA AND NEIL SUTHERLAND.
A DONOR’S POINT OF VIEW
Neil Sutherland, Stollery donor/ president and project manager, Midwest Caissons Six years ago, Neil Sutherland and his wife, Sheila, raced their youngest daughter to the emergency department at the Stollery Children’s Hospital after she’d fainted several times in one day. There, she was tested for neurological and cardiac problems before doctors found her to be healthy. “We were just so lucky that when this was happening, we had a facility like the Stollery to come to,” says Sheila. That was Sutherland’s first personal experience at the Stollery, but his company — Midwest Caissons, a cast-in-place piling business based in Acheson, Alberta — has been donating to the Stollery Children’s Hospital Foundation for many years. Over the last five years, the company’s donations have gone to the Critical for Care campaign, which raised funds for the expansion or improvement of various intensive care units, including the new PCICU.
“Midwest Caissons goes above and beyond — they even asked their business partners and associates to support the Stollery [in its Critical for Care campaign], collecting the donations on our behalf,” says Cyndi Matthews, a senior development officer with the Stollery Children’s Hospital Foundation. To Sutherland, who is co-owner of Midwest Caissons, donating to the Hospital is an easy choice for the company. “The Stollery is a world-class facility with world-class medical professionals, and it’s a source of pride for Albertans — even families who haven’t needed to use it,” he says. The company’s 25 employees in Acheson feel the same way, Sutherland says, since most have children and tell stories, similar to his own, about rushing their kids to the Stollery in a panic. In fact, staff insisted the company continue to donate during the economic downturn. “This is something that staff members still felt was important to contribute to,” he says. “I think that says a lot.”
500
Approximate number of kids who visit the Stollery’s PCICU each year.
1/3
Patients at the Stollery’s PCICU who come from the Edmonton region. The rest are referrals from across Western Canada.
$3.1M Amount of money provided to the new unit by generous donors via the Stollery Children’s Hospital Foundation.
STOLLERYKIDS.COM
19
STURGEON COUNTY
EXPANDING CARE FOR RURAL ALBERTA
A new Stollery NICU opening at the Sturgeon Community Hospital will allow local patients to receive treatment for their premature babies without having to transfer to an Edmonton hospital by Jennifer Dorozio
T
he Sturgeon Community Hospital has the important responsibility of providing medical care to the approximately 20,000 people who live in the municipalities within Sturgeon County and beyond. And, as cities and towns within the county — including St. Albert and Morinville — keep growing, the hospital’s labour and delivery program continues to see an increase in its deliveries; in 2016-17, 3,007 babies were born there. Currently, the Sturgeon Community Hospital doesn’t have a neonatal intensive care unit (NICU) in place, meaning the three to four per cent of newborn babies who need intensive care must be transferred by the Stollery Children’s Hospital transport team to one of Edmonton’s four NICUs, potentially causing undue stress on the newborn, the mother and other family members and leading to inefficiencies in time-sensitive medical processes. Thankfully, this situation is set to change by the summer of 2019, when a Stollery NICU will open at the Sturgeon Community Hospital; this is welcome news to the hospital staff, local community members and provincial politicians. “Having a NICU close to home means one less thing for expecting families to worry about,” says Alberta Minister of Health Sarah Hoffman. “As St. Albert continues to grow, our government is strengthening services families count on.” As an addition to the Stollery’s Edmonton-area NICUs (at the University of
20
HEROES MAGAZINE | SPRING 2018
Alberta Hospital and the Royal Alexandra Hospital), the establishment of this NICU will allow for Sturgeon County families to receive enhanced care for local newborns that need a higher level of care. It will also allow for the majority of the babies to stay on the same site as their mother. Features for the new, six-bed unit NICU will include two private rooms and one “pod” room with space for four babies, as well as areas for new mothers to breast-feed. The provincial government has pledged $2.3 million to the Sturgeon Community Hospital expansion, and the Stollery Children’s Hospital Foundation has launched a fundraising campaign to add $2.5 million to that amount in order to equip the NICU with everything it needs. Responsible for implementing the Stollery NICU is Kristy Cunningham, the
HAVING A NICU CLOSE TO HOME MEANS ONE LESS THING FOR EXPECTING FAMILIES TO WORRY ABOUT. SARAH HOFFMAN, MINISTER OF HEALTH
Stollery’s executive director of Critical Care and Respiratory Therapy, and a St. Albert resident. She is thrilled that families in Sturgeon County with premature babies in need of further care will be able to stay together, and will have ready access to neonatologists and NICU nurses who are equipped to handle these babies’ medical needs. “This now allows us to care for those babies at their home hospital,” says Cunningham. “I feel passionately that we need to keep the mom and baby together for many reasons, one of them being the bonding that happens with mom and babe right from birth.” Not only will this expansion at the Sturgeon Community Hospital give community members and hospital staff peace of mind, it will also address the reality of a growing Sturgeon County population, says Dr. Ernest Phillipos, Zone section chief of Newborn Health for the Northern Alberta Neonatal program at the Stollery. “The number of deliveries in the Sturgeon Hospital has dramatically increased,” says Phillipos. “They have reached a number that has led to the hospital becoming the largest neonatal site that does not have neonatal support in Alberta.” Phillipos says that this six-bed NICU will provide absolutely necessary services to premature babies in the community, but acknowledges a larger NICU will eventually be needed. “This is the first step toward a bigger NICU in the Sturgeon and northern community,” he says.
fundraising AMBER KENT WITH HER TWIN BOYS, BODIE AND CAELLUM.
A Mother’s Perspective
PHOTO COURTESY OF ALBERTA HEALTH SERVICES
AMBER KENT was 28 weeks pregnant with twins when she made the five-minute trip from her home in St. Albert to the Sturgeon Community Hospital due to early contractions last summer. She was nervous. She knew if the twins came early
she couldn’t keep them at the Sturgeon due to its lack of a NICU; babies born there before 36 weeks required transfer to one of the four Edmonton Hospital NICUs, about 25 minutes away. “My goal was to make it to 36 weeks so I could be close to home and have my
DONATE
y a Tod
babies,” says Kent. Unfortunately, she needed an emergency C-section to deliver her twin sons that very day. The boys were then immediately intubated and transferred to the Stollery NICU at Edmonton’s Royal Alexandra Hospital to receive further medical care.
“I didn’t get to see my babies before they left,” says Kent. “I had to wait about eight hours before I was transported to the Royal Alex.” Although Kent knew she could trust the care of the Stollery’s expert staff at the Royal Alexandra Hospital, she says being immediately removed from her babies was difficult. “Not being able to be together added stress,” says Kent. For the five weeks that her twins, Bodie and Caellum, were required to stay in Edmonton, Kent and her husband, Andy, made backand-forth trips to the city. It was a challenging time. Today, Kent is thankful her twins are healthy. She is also thrilled that her home community will have its own NICU by the summer of 2019 so that others won’t have to go through what she did. “Having that extra resource for moms and their babies creates so much more comfort for families,” Kent says. “If something goes wrong and they need the NICU, it’s there.”
You can help babies like Bodie and Caellum get the Stollery care they need at the Sturgeon Community Hospital.
For more information, visit stollerykids.com/sturgeon.
STOLLERYKIDS.COM
21
L
ike many parents, you probably know your child better than anyone else. That’s why when you notice sudden changes in their sleeping and eating habits, or see they are withdrawing from family and friends, it’s normal to feel helpless. You might start by turning to the internet for answers — 24,900,000 search results later and you have more questions than answers. When so much is available and not all of it true, where should you turn? The answer: the experts. Kathleen O’Connor, a clinical psychologist, and Wendy Hoglund, an associate professor of developmental science at the University of Alberta, have some tips to help you better understand and support your child.
5
WAYS TO SUPPORT YOUR CHILD’S MENTAL HEALTH BY ALEXIS MILLAR
1
HAVE A CONVERSATION AND TRULY LISTEN
Simply ask your child. Listen to your child’s concerns and worries. This will help you better understand their emotional state and then discuss their emotions — let them know that you recognize how they feel is important. Kids don’t necessarily need solutions right away. Just trying to find out what the problems are and acting as that “listening ear” is essential. “Comfort them,” Hoglund advises. “That is typically the best thing. But also talk with other adults your child is exposed to. It might help give a more well-rounded picture of your child’s mental state.”
Each child has different needs and is at a different stage of development, so what may be normal for your child may be abnormal for another. “Children show signs of anxiety or depression in different ways, so a child who does well academically could still be struggling in other areas and vice versa,” says Hoglund. It’s incredibly important to talk to your child and determine if the problem they are experiencing needs action — or professional intervention — right away.
22
HEROES MAGAZINE | SPRING 2018
3
PUT AWAY ELECTRONICS
Your child’s sense of self is constantly evolving and they are likely inundated with images of peers’ glorified lives through social media. It’s impossible for them not to compare, and comparison with others is a major way children develop their self-concept.
The number one piece of advice O’Connor has for parents who see her about their child’s mental health is to power down devices. That means everyone puts down their electronics for a period of time — even you.
PHOTO: THINKSTOCK
2
DON’T WAIT FOR THEM TO “GROW OUT OF IT”
mental health DID YOU KNOW? SINCE 2009 THE FOUNDATION HAS PROVIDED
$1.2M for mental health-related research through WCHRI.
FUNDING FOR
32
mental health-related research grants.
FINANCIAL SUPPORT FOR
22
trainees and residents.
HOGLUND AND O’CONNOR PHOTOS BY RIYAZ SHARAN
4
The Stollery Children’s Hospital Foundation has been the primary funder of the Women and Children’s Health Research Institute (WCHRI) at the University of Alberta since 2006, with funds directed to pediatric research. In 2016, the Foundation proudly announced the largest gift ever to the university — $40 million over 10 years — to continue supporting pediatric research that promotes evidence-based practice that allows for new innovations and discoveries in children’s health.
FIND A BALANCE
It’s natural to want to protect your child from anything negative, but it’s impossible. Instead of concentrating only on what’s going wrong, work together to build on the positive. Find out what your child truly enjoys, focus on it and build their confidence. “You could also share some of your own hardships and how you overcame them,” notes O’Connor. “The strategies that you developed may help your child develop their own.”
5
Partners in Research and Innovation
GET HELP IF YOU NEED IT
It’s important to address your child’s mental health concerns early. If you need support, don’t be afraid to ask for help — perhaps from a teacher or school psychologist to start.
Reprinted with permission from the Women and Children’s Health Research Institute.
Wendy Hoglund is a University of Alberta associate professor of developmental science and a member of the university’s WCHRI. Thanks to Stollery Children’s Hospital Foundation donors, Hoglund’s research was supported through WCHRI with a $50,000 Innovation grant for her project, Mental Health in Early Childhood. Her study looked at how
young children’s social and emotional skills/behaviours change during preschool and kindergarten.
Kathleen O’Connor is a clinical psychologist with the Glenrose Rehabilitation Hospital, a WCHRI member and a collaborator on Dr. Amanda Newton’s Breathe study. Breathe is an online anxiety treatment program that youth ages 13–19 can access via a computer or smartphone to help alleviate their anxiety anywhere, anytime. The study is currently in its trial stage and, if proven effective, the Strongest Families Institute plans to use Breathe as a resource for youth across Canada. The Breathe study received $500,000 over five years as a partnership between the Royal Bank of Canada and the Stollery Children’s Hospital Foundation through WCHRI. The Foundation provided an additional $221,000 for this innovative mental health research.
STOLLERYKIDS.COM
23
ALBERTA AND ACROSS WESTERN CANADA
EQUIPMENT
ESSENTIALS With the help of donors, these three devices play a vital role in supporting and saving the lives of Stollery patients from across Alberta and beyond BY ELIZABETH CHORNEY-BOOTH
P
art of the Stollery Children’s Hospital’s strength lies in having the latest equipment to treat children with complex medical needs. Thanks in part to donations to the Stollery Children’s Hospital Foundation, the following devices are used regularly in the Hospital and in the field to save the lives of young patients.
THE ZOLL X MONITOR DEFIBRILLATOR
Often, young patients are transported to the Stollery Children’s Hospital from smaller communities when they need specialized levels of care that can’t be provided at local medical centres. Kids make the trip via ambulance, airplane or helicopter from places as far-flung as Manitoba and the Northwest Territories, and, with the exception of neonatal patients, every one of those transports
involves the Hospital’s ZOLL X monitor defibrillators. Regardless of the reason for transport, patients between the ages of about one month to 17 years are automatically hooked up to the monitor defibrillator, which monitors heart rate, blood pressure, oxygen level and temperature, and alerts the transport team if any of those factors slip out of a safe range. The ZOLL X can also act as a defibrillator and provide heart pacing and real-time CPR feedback if needed. With the Stollery transporting about 275 kids every year, the monitor defibrillator is essential, which is why, in addition to the two that the transport team already has on its transport sleds, a third has just been purchased for backup and educational use. “It’s a piece of equipment that we couldn’t run without,” says Lisa Leroux,
The Great Bear Society The Stollery Children’s Hospital Foundation often receives financial donations as specified by donors’ wills — about $2 million every year. Traditionally, the Foundation hasn’t had a way to officially thank legacy donors
24
HEROES MAGAZINE | SPRING 2018
or develop relationships with them, which is why it formed its Great Bear Society in 2017 as a means of formalizing those willed gifts while the donors are still alive. Anita Klassen, former VP finance for the Foundation,
the Stollery’s pediatric critical care transport team co-ordinator.
VENTRICULAR ASSIST DEVICES
The Stollery uses three different kinds of long-term ventricular assist devices, or VADs: the HeartWare Left Ventricular Assist Device (LVAD), the Berlin Heart and the new SynCardia Total Artificial Heart. Each device differs slightly, but all do the work of the heart and consist of a pump that is installed inside a patient’s body and connected to a driveline or electrical lead that is fuelled by an external power source. SynCardia and Berlin Heart VADs usually plug into the wall but can use battery power for short trips by the patient and can only be used in-hospital due to their larger size. These VADs are used by patients with congenital heart defects or end-stage heart failure awaiting
wanted to help kick off the formation of the Great Bear Society by becoming a member herself. Klassen and her husband, Ric, have both put money aside in their wills to go to the Foundation. As recommended by the Great Bear Society, they did not specify where they would like their gift directed, but rather left the donation
open-ended so that future Stollery staff can determine how the money can best be spent, whether on equipment, programs, research or training. “We have grandchildren, and we want to make sure that this facility is there for other people’s grandchildren or children one day if they need it,” Klassen says.
tech files MADISON BERUBE, SHOWN HERE HOLDING A MODEL OF THE HEARTWARE PUMP, SPORTS A BACKPACK THAT CARRIES THE VAD’S CONTROLLER AND BATTERIES.
MEET MADISON
Thirteen-yearold Madison Berube is a Stollery kid whose heart doesn’t beat on its own. But thanks to her battery-powered HeartWare VAD, living a somewhat regular life is possible.
PHOTO BY COOPER & O’HARA PHOTOGRAPHY
“She can’t exert herself in the way that other kids can, but she goes to school every day and has some independence,” says Berube’s mother, Sandra. “We’re pretty fortunate that she can run on battery power throughout the day.”
heart transplant. The HeartWare VAD, meanwhile, is battery-powered, allowing patients to live outside the Hospital. The Stollery fits about 10 children a year with VADs, serving patients from northern Alberta, Saskatchewan and the territories, and occasionally other parts of Canada.
THE STORK NEONATAL TRANSPORT INCUBATOR
Transporting a newborn baby in medical distress can be a precarious situation: babies on the move must be kept in an incubator to regulate their temperature,
monitor vital signs, dispense medication and provide ventilation. And when a newborn is being transported over 1,000 kilometres in sub-zero temperatures, a standard transport incubator won’t do. Enter The Stork neonatal transport incubator, which is used to transport babies born anywhere from Red Deer to the Yukon to the Stollery Children’s Hospital. In addition to being fitted on sleds for both ground and air transport, these three incubators, which were designed specifically for the Stollery, are constructed with double-walled Plexiglass and are covered to keep the heat in. First built for and
used in circulation at the Stollery in 2004, they also feature instruments that control humidity and temperature. Every newborn needing transport to the Stollery is carried in The Stork, regardless of the complexity of their needs. As a result, The Stork has touched the lives of many Canadian families; in 2017 alone, 778 babies made use of the equipment. “We are unique because of the large geography we serve. Some of our flight times are very long,” says neonatal critical care transport co-ordinator Janice Gillis. “[The Stork] is what we call a homegrown solution.” STOLLERYKIDS.COM
25
STOLLERY NICU AT EDMONTON’S ROYAL ALEXANDRA HOSPITAL
THE POWER OF OBSERVATION
Edmonton is now the home of Canada’s first NIDCAP training centre, placing the Stollery Children’s Hospital at the leading edge of neonatal care BY ROBBIE JEFFREY
26
HEROES MAGAZINE | SPRING 2018
because I feel like it would have made a significant difference in my daughter’s life.” The ultimate aim of the NIDCAP approach is to improve outcomes — in particular, by learning to read and interpret an infant’s behaviour. “All premature babies have a story to tell about the kind of stress they’re experiencing,” Middleton Revet says. “Whether they’re feeling good, or if something is too much effort for them, they tell that story through their behaviour.” NIDCAP is about observing, documenting and drawing conclusions from this behaviour and using that knowledge
to support the baby’s development in tangible, practical ways. The NIDCAP model is proven to help with things like longer sleep and easing off respiratory support more quickly. Currently, there are just 23 locations around the world that teach the NIDCAP approach, and Canada is now home to one of them. In October 2017, the Stollery NICU at the Royal Alexandra Hospital became the location of Canada’s first NIDCAP training centre, placing the Stollery at the leading edge of neonatal care. In early 2018, it accepted its first batch of trainees.
ALL PREMATURE BABIES HAVE A STORY TO TELL ABOUT THE KIND OF STRESS THEY’RE EXPERIENCING. CAROL-ANNE MIDDLETON REVET
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
I
n 1987, Carol-Anne Middleton Revet was less than 34 weeks into her pregnancy when her daughter was born prematurely. As a young mother who had expected to carry her child to term, Middleton Revet felt woefully unprepared as she discovered first-hand that children born prematurely can face a variety of challenges in their lives, including vision impairment, hearing loss, intestinal problems, and behavioural and cognitive issues. Skip ahead 31 years, and Middleton Revet, who became a registered nurse in 2004, is a NIDCAP-certified professional and unit manager in the Stollery neonatal intensive care unit (NICU) at Edmonton’s Royal Alexandra Hospital. NIDCAP, which stands for Newborn Individualized Developmental Care and Assessment Program, is a model of care that takes a comprehensive, individualized approach to supporting the development of babies born prematurely (at least three weeks before their due date). “At the time [of my daughter’s birth], there wasn’t anything like NIDCAP,” Middleton Revet says. “I wish there was,
teamwork
The Stollery Children’s Hospital Foundation has provided
$1 MILLION in funding for NIDCAP since 2012.
CAROL-ANNE MIDDLETON REVET.
STOLLERYKIDS.COM
27
Hands-On Learning The Stollery Children’s Hospital’s brand-new NIDCAP training centre, located at the Royal Alexandra Hospital, will teach nurses, physicians and allied health staff from across Canada and around the world. After an essay submission and an interview process, trainees who are accepted into the program will attend a group seminar and an initial two-day intensive training session. The expectation is that trainees practice the behavioural observation and care plan write-up, and follow up with bedside staff and parents at least twice per month. Overall, training to be a NIDCAP-certified professional takes about a year, and sessions can be as small as two trainees and a NIDCAP trainer or trainer-in-training, since the idea is to keep the education as direct as possible. Tamara Carson, a registered nurse at the Royal Alex who works in its Stollery NICU, is one of the Stollery’s first NIDCAP trainees to be trained at the Edmonton NIDCAP training centre. Her instruction schedule is rigorous, but she describes the centre as a welcoming environment where everyone is excited about helping the babies. “I feel really lucky to have been given the opportunity to learn NIDCAP,” she says. “I truly believe it will give our tiny patients their very best chance at healthy and happy lives.”
28
HEROES MAGAZINE | SPRING 2018
ANDREA NYKIPILO IN THE STOLLERY NICU.
PAYING CLOSE ATTENTION
Andrea Nykipilo, an RN who has worked in the Stollery NICU for 16 years, is a NIDCAP trainer-in-training. She became a NIDCAP-certified professional in 2006, and in the last few years decided she wanted to teach it to others, too. (It usually takes about five years to become a trainer.) Her day-to-day work as a NIDCAP-certified nurse involves bedside coaching of parents and staff, writing care plans and conducting formal NIDCAP behavioural observations — watching the babies when they’re asleep, while they’re interacting with their caregivers or when they’re having some kind of procedure done.
“[With NIDCAP], the most eye-opening thing for me was when I started to see these little reactions within the baby — you see them react in these subtle ways, and you start to observe all these new behaviours, and it all starts to mean something,” Nykipilo says. “I’m pretty excited that I’ll get a chance to teach that with my NIDCAP training.” Nykipilo says that NIDCAP has a longer history in Edmonton than one might think: in 2009, the University of Alberta published a study documenting a randomized control trial of NIDCAP-based developmental care. At the time, this type of care was relatively new, and the study was crucial in proving the method’s
teamwork efficacy. “We showed that babies who got NIDCAP care, and who had regular observations by the NIDCAP-trained professionals, went home sooner and came off ventilators sooner,” she says. “It improved the overall outcomes, which is what we want.”
EMPOWERING PARENTS
NIDCAP also places crucial focus on the babies’ parents. The experience of a preterm birth can be traumatic for parents: when they see an intravenous line in their child’s belly button, or the probes and monitors attached to their child, they might become afraid to even touch their new baby. Part of NIDCAP is educating parents that it’s okay to touch, to hold, and to care for their
WE SHOWED THAT BABIES WHO GOT NIDCAP CARE... WENT HOME SOONER AND CAME OFF VENTILATORS SOONER. ANDREA NYKIPILO
child. NIDCAP encourages “kangaroo” parenting — keeping the baby close to the chest, feeling the heartbeat and breathing patterns, getting familiar with each other’s touch and scent. It also encourages the parents to communicate with the doctors and nurses and be advocates for their child. “[NIDCAP] is about empowering parents as the primary caregiver of the baby, the way it should be, nurturing them to nurture this tiny human being who is not yet meant to be in the cold, harsh environment outside of the womb,” Middleton Revet says. “To expand NIDCAP education throughout Edmonton and, one day, to the rest of Alberta and Canada, will be such a positive change for babies and their families.”
YELLOWKNIFE
HASZARD FAMILY PHOTOS COURTESY OF SHANNON HASZARD
Finding Comfort Through Focus
DAN AND SHANNON WITH THEIR DAUGHTER, LIV.
Shannon Haszard was just 25 weeks pregnant when, on March 23, 2014, she felt pain while walking her dog around Yellowknife. She drove herself to the hospital, assuming the doctors would soon send her back home. They told her she was in labour. Her husband, Dan, packed a bag and rushed over, and they were flown to Edmonton in an air ambulance, then taken by road ambulance to the Royal Alexandra Hospital. Liv Coulton was born a few hours later weighing just 750 grams — “extreme prematurity” was the term the new parents were given to describe their daughter’s early arrival. Anxious and frightened, Dan and Shannon
found comfort through the help of the Stollery’s NIDCAP team at the Royal Alex. “In a situation where you otherwise feel out of control, NIDCAP helped provide a tangible way to feel in control,” Haszard says. “That empowered me and Dan tremendously — it gave us something really positive to focus on.” Today, Liv is four years old, and while she weighs only 27 pounds, she’s “a happy, goofy, vibrant girl,” says Haszard. “When we meet people now who don’t know about Liv’s [early challenges], they don’t realize there’s anything different about our lives.”
STOLLERYKIDS.COM
29
DRAYTON VALLEY
CINDY AND MONTE WARONEK WITH THEIR SON, JEFFREY.
LIFELONG
COMMITMENT A personal experience inspired the Waroneks to become long-term donors to the Stollery
H
ours after Cindy and Monte Waronek’s youngest child, Jeffrey, was born, he was carried by ambulance from the Drayton Valley Hospital and Care Centre to the Stollery Children’s Hospital in Edmonton. There, he was given a 50/50 chance of surviving the next 72 hours. Jeffrey had a serious respiratory condition that required him to be intubated.
30
HEROES MAGAZINE | SPRING 2018
“He couldn’t even make a sound when he cried,” Cindy says. With the support of Ronald McDonald House and the Stollery staff, the family spent three weeks at the Hospital. One of the respiratory technicians there reassured the Waroneks. “Your son will be fine,” he told them. “He just may never be an athlete.” That was 20 years ago. Despite the technician’s prediction, Jeffrey is now a junior hockey player. As for Cindy and
Monte, they’ve become long-term supporters of the Stollery Children’s Hospital Foundation, contributing $56,000 since 2001. Cindy says they want to give back to a place that had made such an impact on their lives, and they hope to help other families in similar situations. “We feel that Jeffrey is alive today because of the Stollery,” she says. Monte says giving back has always been important to him and to Cindy.
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
BY JULIA WILLIAMS
NORTHERN & CENTRAL ALBERTA
WE FEEL THAT JEFFREY IS ALIVE TODAY BECAUSE OF THE STOLLERY.
from the heart
Better Connections Lead to Better Outcomes
CINDY WARONEK
“When we plan out our annual donation money, we look at what has personally impacted us as well as our community needs,” he says. When the Waroneks contribute to the Stollery, it fulfills both these requirements. Monte has never forgotten the quality of care Jeffrey received during his hospitalization, nor has he forgotten the compassion and honesty of his son’s care team. “The nurse was able to answer anything we needed her to,” he says. He hopes his family’s donations will help the Stollery acquire new equipment and keep its facilities up-to-date so that other families receive the same level of excellence. Among other large-scale projects, the Waroneks’ contributions have helped to support the Stollery’s Critical for Care campaign. The campaign, which ran from 2012 to 2016, helped to fund the expansion of operative services and intensive care units at the Stollery. As part of the project, the redeveloped OR space gained five state-of-the-art operating theatres and two purpose-built pediatric procedure rooms. These changes have allowed the Stollery to greatly reduce wait times. Cyndi Matthews, senior development officer of major giving with the Stollery Children’s Hospital Foundation, says having modern infrastructure and equipment not only enhances care for children and families, it helps to attract the best staff. She’s grateful for the Waroneks’ ongoing pledge commitment to the Foundation, which made a difference when Alberta was going through tough economic times. “It’s so extremely helpful because we can count on it,” Matthews says.
LAURIE SCHICK AT A MOBILE VIDEOCONFERENCING STATION.
Donations aren’t just used to upgrade the Stollery — they also help to expand the reach of the medical facility far beyond its physical walls. A new communication system is making it easier for delivery rooms in rural northern and central Alberta to access immediate support from Stollery-based pediatric specialists. This type of support can be critical when babies are born premature or in distress and there is no on-site pediatric physician. Laurie Schick, nurse telehealth facilitator for the Stollery, has spent the last five years developing the NICU to Nursery Videoconference Program. Supported in part by funds from donors like the Waroneks, this
mobile videoconferencing station allows rural nurses and physicians to connect instantly with the Stollery NICU. The team then works with a pediatric specialist who can help to make assessments, guide procedures and determine whether or not a newborn must be transported to the Stollery. Formerly, rural delivery rooms could receive NICU support by telephone, but Schick believed adding a visual connection would help with decision-making and lead to better outcomes. In 2013, she oversaw the installation of the first videoconferencing station in a hospital in High Level. Schick and her team have now implemented the NICU to Nursery Videoconference Program in 20 nurseries, delivery rooms, operating rooms and emergency rooms in northern and central Alberta — and plan to connect several more sites. Schick says she has received uniformly positive feedback from everyone involved, from families and rural medical staff to specialists at the Stollery. Program use is on the rise: the number of NICU-nursery videoconference connections has doubled each year the program has operated.
DID YOU KNOW? Stollery pediatricians also now have secure data ports in their own homes, which means they can assist with rural deliveries without having to be in the hospital.
STOLLERYKIDS.COM
31
FROM ALBERTA TO AFRICA
haviour and newborn immune systems — has global implications, and it will help to improve children’s health here in Alberta. Hawkes says it’s always a relief for a researcher to secure essential financial support. “I’m delighted we can have these funds to move ideas forward that can have big impact.” Earlier in his career, Hawkes engaged in a different big-impact project — to improve conditions for pneumonia patients. While working in Uganda, he quickly discovered that conventional oxygen delivery systems — which rely on a steady flow of electricity — were unreliable. “You can have a power cut and have Dr. Michael Hawkes is finding new ways to treat some children die in front of your eyes,” he says. To address the problem, he developed of the world’s biggest health challenges BY JULIA WILLIAMS an oxygen concentrator that is powered by solar panels. In a randomized controlled trial, Hawkes’ solar-powered some activity on the blood-brain barrier oxygen concentrator proved as clinically or most physicians, coming up and came across some cancer drugs,” effective as the conventional compressed with a new malaria treatment Hawkes says. oxygen cylinders. He is now working with would be a career apex. For The anticancer drugs he and his team the Uganda Ministry of Health to expand Dr. Michael Hawkes, it’s just found have proven effective at treating the program, known as the Solar Oxygen the most recent innovation in a cerebral malaria conditions in lab tests. Project, to 20 sites across the country. career devoted to improving outcomes Next, the drugs will be tested on animal The Solar Oxygen Project has caught for children battling some of the world’s models and eventually in human subjects. the attention of global health leaders, most deadly diseases. Hawkes says the fact that these meditoo. In 2015, Hawkes was one of 10 Hawkes is an assistant professor at the cations are already FDA-approved will innovators invited to present his work University of Alberta in the department of simplify the process of getting the drugs to a panel of experts, including delegates pediatrics, Division of Pediatric Infectious from bench to bedside. from UNICEF and the Malaria Diseases. In 2011, he went to work in rural In January 2018, Hawkes Consortium, at the PneuUganda and saw first-hand the difficulty learned that his malaria monia Innovations of managing conditions like pneumonia research will be Summit in New York and malaria in a developing country. supported by the City. The project Hawkes believes many children die needStollery Children’s also took Hawkes lessly of conditions that are treatable. Hospital Founto the Energy Best “That’s what’s driving me, is the childation through Practices Pavilion dren in these low-income settings,” he the Women and at Expo 2017 in says. “We have to come up with solutions Children’s Health Kazakhstan. to these problems.” Research InstiNext, Hawkes Hawkes is currently engaged in a tute, which awards plans to tackle research project to test potential malaria DR. MICHAEL HAWKES grants to projects another major globmedications. Conventional malaria drugs that improve the al health problem: target the parasite that causes the illness, health of women HIV. He’s researching but Hawkes believed he could find a medand children. Four of his ways to identify infants ication that could be added to a treatment University of Alberta colleagues who’ve contracted HIV from program to target cerebral malaria. This also received Canadian Institutes their mothers as early as possible, so that neurological complication occurs when of Health Research New Investigator treatment can begin as soon as possible. the blood-brain barrier fails to perform grants, matched by the Stollery Hawkes believes physicians have a role its protective function properly, which Children’s Hospital Foundation. Like as innovators, not just as practitioners. can cause seizures, comas or death. Hawkes, their work — which addresses “We should always be thinking outside “We combed the literature for new health challenges including sleep bethe box,” he says. drugs on the market that might have
INVENTING
CURES
F
I’M DELIGHTED WE CAN HAVE THESE FUNDS TO MOVE IDEAS FORWARD THAT CAN HAVE BIG IMPACT.
32
HEROES MAGAZINE | SPRING 2018
innovator DR. MICHAEL HAWKES EXAMINES A YOUNG PATIENT IN KAMBUGA, UGANDA.
3 INNOVATIVE PROJECTS Dr. Michael Hawkes has devoted his career to improving outcomes for sick children through initiatives that include:
1 THE SOLAR OXYGEN PROJECT An oxygen concentrator powered by solar panels, for use in developing countries.
2
PHOTOS BY JOHN KANYONYOZI
NEW MALARIA MEDICATIONS Treating cerebral malaria with anticancer drugs.
3
KAMBUGA DISTRICT HOSPITAL.
HIV RESEARCH Finding new ways to deliver early-as-possible treatment to infants with HIV.
STOLLERYKIDS.COM
33
ALBERTA-WIDE
KATHY REID loves to collect the art, poetry and prose projects designed by youth in her Pain 101 classes. “My walls are covered with amazing work created by these kids, describing their own experiences,” she says. She has been instrumental in featuring samples on the Hospital’s art wall for everyone — from inpatients and outpatients to visitors and donors — to see and enjoy.
34
HEROES MAGAZINE | SPRING 2018
specialist
MANAGING
PAIN
Kathy Reid has made it her mission to help children living with chronic pain in creative and effective ways BY COLLEEN BIONDI
PHOTO: COOPER & O’HARA PHOTOGRAPHY
A
s a young girl growing up on Manitoulin Island, Ontario, Kathy Reid dreamed of being a nurse. When she was a teenager, she volunteered as a candy striper at the local hospital and was further encouraged by a neighbour who worked in the nursing profession. After graduating from Queen’s University with a bachelor of nursing science she moved to Edmonton, where she has spent the last three-plus decades working with children at the Stollery. “It has been a dream career,” Reid says. “I love what I do.” Reid started out on the Hospital’s surgical unit. Then, in 2000, she moved to acute pain services and, in 2005, began chipping away at a master’s degree/nursing practitioner program — specializing in pain — at the University of Alberta. When she was approached by Hospital leadership to get involved in caring for patients with chronic pain, she jumped at the chance. “Acute pain is episodic,” says Reid. “But with chronic pain, you develop longerterm relationships with children and their families.” In 2007, she was asked to join a team working to create a clinic at the Stollery dedicated to chronic pain. After conducting exhaustive research and studying
similar programs in places like Toronto, Calgary and Halifax, Reid opened the clinic in 2008 — the same year she completed her master’s program. Since then, she has proudly served as the clinic’s nurse practitioner. In this role, she works with a segment of the estimated five per cent of children experiencing “difficult to manage,” chronic pain (headache, abdominal and musculoskeletal issues are common varieties). This pain negatively impacts school attendance, appetite and sleep, not to mention the ability to make friends or commit to social activities. It can also contribute to mental health issues like anxiety and depression. Seeing approximately 60 new patients each year, and following patients until they reach adulthood, staff at the clinic
IT HAS BEEN A DREAM CAREER. I LOVE WHAT I DO. KATHY REID
do not dwell on the intensity of a patient’s pain (scales are notoriously unreliable in measuring chronic pain, says Reid), but instead on pain management and quality of life issues. The clinic team — which consists of Reid, two anesthesiologists, a psychologist and a physiotherapist — meets with each new child and family to conduct a thorough medical history, as well as a physical examination and psychological workup. Following that, a treatment plan is prepared, encompassing physical, psychological and/or pharmacological dimensions. “The family reflects on the recommendations and chooses which ones make sense to them,” says Reid.
UNCONVENTIONAL CLASSROOM
Together with her psychologist colleague, Dr. Bruce Dick, Reid also teaches a hospital-based classroom course for teenage patients called Pain 101. Adapted by Dick from a program in England, the course consists of 90-minute sessions each week for 11 weeks and covers a variety of topics, including the science of pain, relaxation, pacing activities, sleep, mindfulness, how to challenge negative thoughts, managing stress, and communication. Teens in the course also learn how to create a “set-back” plan for extra-difficult days. And youth who live outside the greater STOLLERYKIDS.COM
35
specialist
BY THE NUMBERS
2008
The year the Pediatric Chronic Pain Clinic opened.
36
HEROES MAGAZINE | SPRING 2018
supportive strategies,” says Reid. “I’ve heard positive comments from colleagues as far away as Australia.”
A WELL-DESERVED HONOUR
Last year, in recognition of all she has done for youth living with chronic pain, Reid was honoured as a pioneer in health innovation by the Canadian Nurses Association. “It was a huge honour,” she says. Her hometown felt the same way: Reid was featured on the front page of the local newspaper — The Manitoulin Expositor — and her father bought 100 copies to distribute to the community. Her team at the Stollery was equally proud. “Kathy demonstrates compassion and caring for all those she comes in contact with,” says colleague Dr. Bruce Dick. “She also has tremendous energy, and she works extremely diligently for the good of others.” Seeing children in pain can be difficult. But what motivates Reid is being an advocate for these kids — validating their pain, helping them cope and giving them hope. “I feel privileged to be on this journey with them,” she says.
40
Percentage of clinic patients who live outside the greater Edmonton area.
60
Number of new patients each year, all of whom the team follows until adulthood.
150
Kathy Reid was recognized in 2017 as one of 150 pioneers in health innovation by the Canadian Nurses Association.
PHOTO: GRADYREESE/ISTOCKPHOTO.COM
Edmonton area — about 40 per cent of Reid’s caseload — or those who prefer to, can participate via Telehealth technology from their high school. Reid has also worked tirelessly with Alberta Education to get Pain 101 designated as a bonafide high school course option (called Chronic Pain 35). The course officially became a recognized option by Alberta Education in 2015, after nine months of lobbying by Reid. Now, teenage clinic clients who complete the course are eligible for three Grade 12 credits, setting them on an easier path toward graduation and success in young adulthood. In addition to her clinic and teaching work, in 2015, Reid teamed up with a small group of researchers at the U of A to conduct a two-year study using qualitative interviews with clinic participants in order to create an e-book called Learning to Live with Chronic Pain. Now published, this book follows a composite family’s experience and includes definitions, pain management exercises and illustrations. “It allows families in remote communities or on clinic wait-lists to access a viable, pain management resource filled with
big give
CANADA AND NORTH AMERICA
ED WIRUN, VP OPERATIONS WITH WALMART CANADA, AND CHAMPIONS LILY AND JACK PINCHUK, FROM FORT SASKATCHEWAN.
PHOTOS: COOPER & O’HARA PHOTOGRAPHY
CHAMPIONING SICK KIDS
Through the Champion Child program, Children’s Miracle Network and Walmart Canada are making a difference and shining a spotlight on the bravery of sick kids and the work of children’s hospitals like the Stollery BY CAITLIN CRAWSHAW STOLLERYKIDS.COM
37
Y
ou’d never guess that Jack and Lily Pinchuk were Stollery kids. With wide smiles and lots of energy, the siblings — aged 16 and 12 — look as healthy as any other teens their age, but suffer from the same rare, genetic disorder. After harrowing journeys that culminated in organ transplantation for both, Jack and Lily are finally living normal lives, free of phototherapy beds, medication and chronic jaundice. Now the siblings are sharing their experiences with the world as the Stollery’s 2018 Children’s Miracle Network (CMN) Champions. As a member of CMN — a fundraising organization for children’s hospitals across North America — the Stollery has participated in the Walmart-supported Champion Child program for the last 12 years. Each year, the Hospital selects one remarkable child (or, in rare cases, siblings) to serve as an ambassador and share their stories at local events throughout the year. Champion children also bring their message further afield, travelling to Ottawa to connect with other Canadian Champions (and to go on a Walmart shopping spree), and then to Orlando to meet their American IT WAS A COOL cohorts, explore Walt Disney EXPERIENCE TO FIND World Resort and take part in OUT WE’D BEEN CHOSEN a medal ceremony. TO REPRESENT THE STOLLERY “It was a cool experience to find AND THE KIDS WHO GO out we’d been chosen to represent THROUGH IT. the Stollery and the kids who go JACK PINCHUK through it,” says Jack. Like Lily, he’s grateful for his newfound health after years of care at the Stollery, and he feels a strong need to give back to the community — and represent other sick kids — now that he’s well. Jack admits he was surprised to be chosen over other kids — especially those who are still sick: “Seems to me like we got off a little bit easy.” But, as his parents will tell you, there’s been nothing easy about the road the family has travelled.
“ORANGE AS A PUMPKIN”
A week after the birth of their first child, Jay and Deborah Pinchuk rushed baby
38
HEROES MAGAZINE | SPRING 2018
Jack to the emergency room in a panic. Although he had shown signs of jaundice at two days old, now he was “orange as a pumpkin,” says Deborah. To her surprise, the nurses seemed unconcerned. “They said that we were first-time parents, that all babies are jaundiced and we just had to put him in the window.” They headed home, placed the baby in direct sunlight — a common treatment for mild jaundice — and tried not to
worry. But a few days later, when they brought Jack to a clinic to be circumcised, medical staff were alarmed by his appearance and ordered immediate bloodwork. The results showed dangerously high levels of bilirubin, a yellow pigment formed by the liver. “We brought him to the Stollery and spent the next three months there,” says Deborah. It took time for doctors to identify the cause of Jack’s liver problems, but further tests ultimately revealed he had a rare genetic disorder called Crigler-
big give
I THINK WHEN YOU’RE DONATING AND IT’S IN YOUR BACKYARD, GOING TO YOUR LOCAL HOSPITAL, IT MEANS A LOT. ED WIRUN
ed to their new normal, and went on to have three more children. While their second and fourth children were born healthy, their third child, Lily, was born with CNS, just like Jack.
ANOTHER SICK CHILD
JACK AND LILY PINCHUK.
Najjar Syndrome (CNS). Jack was one of just 500 people around the world born without an enzyme that breaks down bilirubin in the liver. Without proper treatment, he could lose his hearing, suffer brain damage and even die. It was a shock to the young family. “You never think that your kid is going to be sick,” says Jay. But now that Jack was a Stollery kid, he could get the help he needed, such as medication and a special phototherapy bed (like a tanning bed, but with blue light) to help his body process the bilirubin. The couple adjust-
While it was heartbreaking to have a second child sick with the same illness, the Pinchuks say it was easier than the first time around. “We knew right away to advocate for her and we had a voice for her,” says Deborah. A quicker diagnosis meant Lily didn’t get as sick as Jack had, and they knew what to expect from treatment. “We’d been through it for four years before Lily was born, so we probably knew more about CNS than every intern who talked to us,” says Jay. Now there were two bedrooms in the household that shone blue light under the door each night and two siblings with noticeably yellow skin and eyes. Unfortunately, phototherapy and drugs could only fend off the buildup of bilirubin for so long and, eventually, both kids needed liver transplants. When Jack began to show signs of declining health a few years ago, Jay and Deborah took their extended family out for dinner to ask them to consider donating a portion of their liver to Jack. “It’s such a huge thing to ask,” says Deborah. “You’re risking your life for somebody.” Even so, 12 people volunteered to be tested for compatibility and eventually,
Deborah’s brother proved to be the best match. In 2014, Jack received the liver donation and, after a year of medical complications, the family watched in delight as the yellow faded from his skin and he became a healthy young man. Last year, it was Lily’s turn for a transplant and the family went through a similar process to find a living donor. This time, it was Lily’s aunt — the wife of Deborah’s brother — who proved to be the best match.
A NEW LEASE ON LIFE
For both kids, having a liver transplant has made a world of difference not only to their health, but their quality of life. “They can now travel anywhere they want. They can have sleepovers,” says Deborah. For Jack, the transplant has improved his performance in school as he no longer struggles to focus as a result of excess bilirubin in his body; now, he’s planning to be a filmmaker. Being healthy has also allowed both kids to give back. In 2016, they helped raise nearly $28,000 for the Stollery through a year-long fundraiser at their school and, for several years, Jack has offered peer support to other teens awaiting transplant at the Stollery. While being Champions comes with plenty of perks, both kids see it as an opportunity to support the hospital that saved their lives and be a voice for other sick kids. “I want to make them proud,” says Lily. STOLLERYKIDS.COM
39
big give
From Surviving to Thriving Dr. Susan Gilmour has helped thousands of children survive liver transplantation, but she’s also concerned with the longterm happiness of her patients.
ED WIRUN. ED WIRUN.
THE COMPANY KNOWN FOR ROLLBACKS PAYS IT FORWARD
Since its arrival in Canada in 1994, Walmart has supported Champion kids like Jack and Lily, and the work of children’s hospitals, through CMN. “It was a natural fit, right out of the gate,” says Ed Wirun, VP operations for Walmart Canada. Not only are many Walmart shoppers parents, but its employees include many mothers and fathers. Over the years, Walmart Canada has raised $110 million for hospitals across Canada, including $7 million for the Stollery. On top of supporting the Champion Child program, the company solicits donations from customers at the till and donates sales from certain products throughout the year. In Edmonton and northern Alberta, all of the donations go to the Stollery. “I think when you’re donating and it’s in your backyard, going to your local hospital, it means a lot,” says Wirun. Over the years, he’s had the opportunity to attend Champion events in Orlando and has been struck by the strength of the children. “The kids are resilient and have so much passion,” he says.
40
HEROES MAGAZINE | SPRING 2018
For Jack and Lily’s doctor, Dr. Susan Gilmour, there’s something special about practicing pediatric medicine. “I’ve always been inspired by children and their resiliency,” she says. “And I’ve always enjoyed engaging with families.” Since arriving at the Stollery Children’s Hospital in 1997, the gastroenterologist has cared for thousands of kids with liver problems. Because Dr. Gilmour’s area of specialization is childhood liver disease and liver transplantation, the Stollery was a natural fit. For decades, the Hospital has been a leader in childhood organ transplantation, though it didn’t have a stand-alone pediatric liver transplant program when Dr. Gilmour arrived.
“At the time, it was completely integrated with the adult program,” she says. Seeing a need for specialized supports for children, Dr. Gilmour helped to establish a pediatric liver transplant program complete with a dedicated health team that now includes a nurse, dietician, social worker, child life specialist and clinical research co-ordinator. As the director of the program, Dr. Gilmour oversees the transplants of children from across Alberta, BC and Saskatchewan. Over the years, Dr. Gilmour has also helped establish a Division of Pediatric Gastroenterology/ Nutrition at the University of Alberta and has created a subspecialty residency program for new doctors interested in gastroenterology, pediatric liver disease and transplantation. She’s also moved into several leadership roles within both the Stollery and Alberta Health Services, but she finds a way to juggle her administrative and clinical work with research into the long-term wellness of liver transplant patients. “I’m interested in how they’re functioning as kids post-transplant,” she says. “It means nothing to a 12-year-old that their liver values are fine when they’re failing in math or struggling in their friendships.” Even when transplant patients are medically stable, they may not be as healthy and happy as their peers thanks to the long-term effects of treatment. Transplant kids are more likely to have learning disabilities, for instance. “I think we do a good job of supporting these children through their transplants and back home,” says Dr. Gilmour. “But we need to go the next step and make sure they grow up to be happy, productive adults who are able to succeed socially.”
SUSAN GILMOUR PHOTO BY KEVIN TUONG
WESTERN CANADA
paying it forward
COLD LAKE
THE LEADERSHIP TEAM AT COLD LAKE HIGH SCHOOL.
TAKING THE LEAD Students from Cold Lake High School found plenty of inspiration and motivation at the You(th) Make Impact summit BY GLENN COOK
PHOTO BY SHELLEY BOROWSKI
L
ast fall, when the student leadership team at Cold Lake High School (CLHS) heard about the Stollery Youth Network’s plans to host its first-ever You(th) Make Impact summit — in which teens from across northern Alberta would come together for workshops on leadership, volunteerism and fundraising — it felt like a match made in heaven. The CLHS students had chosen health care as their focus for the 2017-18 school year, and, given the role the Stollery Children’s Hospital plays in supporting the health of residents in Cold Lake (located about 300 kilometres northeast of Edmonton), it seemed like a natural fit. “It was absolutely a perfect marriage in terms of the
youth wanting to go and how we could support and empower them in that,” says Pennylynn Heffner, a student advocacy counsellor at CLHS who runs the student leadership team alongside student support co-ordinator Carolyn Crocker and educational assistant Sara Forsyth. On October 21, 2017, five students from the CLHS leadership group attended the one-day summit at MacEwan University in Edmonton. They joined around 140 other youth between the ages of 13 and 17 in information sessions and panel discussions about finding ways to make a difference in the health of their communities. Shelley Borowski, senior manager of volunteer engagement with the Stollery Children’s Hospital Foun-
dation, oversees the Stollery Youth Network in her role. She says it was inspiring to see the enthusiasm the kids brought to the summit. “They’re thirsty for knowledge, but they also have energy — they want to do something,” she says. “That is hugely motivational.” The ideas and discussions at the summit were certainly inspiring for the CLHS leadership group, who came back to Cold Lake with plenty of ideas and motivation to raise money for the Stollery. “Listening to the kids on the bus on the way home, and then to how they presented to the rest of the leadership team [at CLHS], I was taken aback and humbled,” Heffner says. “These are our leaders of tomorrow; these are the kids that make the change.”
Among the initiatives to arise out of the summit was a community coffeehouse fundraiser, which the CLHS leadership group hosted in the school gym, with snacks, entertainment and local products for sale. The response from students and parents was enthusiastic — and demonstrated to Heffner and Crocker just how strong the ties between CLHS and the Stollery really are. “There are many [Stollery] success stories, and we saw that come through when we started posting on social media that we were hosting a fundraiser for the Stollery,” Crocker says. “I had many people contact me saying their child had been at the Stollery, or a niece or a nephew, or they had spent time at the Stollery themselves.” It’s personal connections such as these that spur many students to become part of the Stollery Youth Network. Established in 2014, it’s made up of students from Grade 5 to university who engage in a variety of fundraising initiatives and community events throughout the year. “The most important thing is youth helping youth. To me, there’s nothing more powerful than that,” says Borowski. “As a parent, to see your child want to make a difference, and to see that initiative come from them, I think it’s inspiring.”
COMING UP Plans are underway for the October 27, 2018, You(th) Make Impact summit. Visit stolleryyouthnetwork.ca for more information. STOLLERYKIDS.COM
41
reflections ROBYN EESON WITH HER HUSBAND, DAN BLOCK, AND SON, NOAH.
GIVING COMFORT Robyn Eeson, a volunteer with the Stollery Women’s Network and longtime donor, tells us why getting involved is important to her Stollery Women’s Network (SWN), which is a committed group of women who work together to raise awareness and funds for the Hospital — and truth be told, we have a lot of fun doing it! Through my involvement with SWN, I have witnessed first-hand that every contribution truly matters to the Stollery. Whether you can donate $10 or $10,000, or volunteer for one hour or 100 hours, it all counts and it all has impact. Our most recent campaign is the perfect example of this. The Giving Comfort campaign is intentionally designed around the little things. Funds raised go toward purchasing comfort items for families that find themselves in the Stollery’s emergency room. Why comfort items? Because we know that even the
4
42
most organized mom with the biggest of “mom-purse” cannot possibly be fully prepared for an unexpected stay in the emergency room. That’s where the SWN and the Giving Comfort campaign comes in. We have a ready supply of all the little things that make a trip to the ER a bit more manageable: toys for an anxious sibling, a blanket for a stressed mom,
toiletries for a panicked dad who has come straight from work. All small things, but we know they make a difference and can help a family focus on caring for their sick child. For me, it’s an easy decision to support the Stollery, and I feel very privileged to be a small part of the big impact that the Stollery has on our community.
WAYS TO GET INVOLVED
1
2
3
4
JOIN THE STOLLERY WOMEN’S NETWORK Contact Brianne Thomas, SWN program director, at 780.431.8906 or brianne. thomas@stollerykids.com.
GET SOCIAL Follow @stollerywomens on social media to see what we’re up to and to share our posts.
ATTEND SWN EVENTS Visit stollerywomensnetwork.ca to learn about our upcoming events.
DONATE TO THE GIVING COMFORT CAMPAIGN Sign up as a monthly or one-time donor. Click “Donate” at stollerywomensnetwork.ca.
HEROES MAGAZINE | SPRING 2018
PHOTO BY SEAN WILLIAMS PHOTOGRAPHY
M
y family and I are proud supporters of the Stollery Children’s Hospital Foundation. When it comes to the Stollery, we do it all — we are donors, volunteers, participants, gala guests, golfers and lemonade stand hosts. But why the Stollery? To me, the real question is, why not? As an Edmontonian, why not support a world-class children’s hospital that’s right in my backyard? As a volunteer, why not give my time to an organization that genuinely values my efforts? And as a mom, why not support a facility that’s there to care for my son at any moment? My engagement with the Stollery has evolved over the years. Currently, I’m honoured to be part of the
YOUTH S ER FUNDRAIS BIRTHDAY PARTIES
Kids raising money to help kids Take a photo with our Stollery cheque and write your name on our Superstars wall to celebrate your success. Receive an invitation to our annual Stollery Superstars Party presented by Northlands and Canadian Western Bank.
For more information, call 780.431.4604 or email tannis.peterkin@stollerykids.com
Broken heart to backyard, Stollery care gets kids there. Donate Today
stollerykids.com
50,400
291,000+
EMERGENCY ROOM VISITS PER YEAR
PATIENT VISITS PER YEAR AND GROWING
32%
OF PATIENTS COME FROM OUTSIDE THE EDMONTON REGION
Avery, 13, loves art classes and riding horses. And thanks to lifesaving open-heart surgery at one week old, she’s able to follow her passions. Avery’s family is thankful the Stollery’s world-class care is right in their own backyard and gave Avery the chance to put what's in her heart on a canvas for the world to see.
780.433.KIDS (5437) | stollerykids.com | #stollerykids