Guardians Magazine: Winter 2018

Guardians Winter 2018

Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

New

Children’s Discovery Institute supplement inside

Strong, Proud and Positive

A Heart Center Family Faces Down Every Challenge see page 4

Doing What’s Right for Kids!

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Owen kicked cancer. Twice!

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Hockey with a heart

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A lifelong memory turns into a legacy of giving

Greetings from the Children’s Discovery Institute, Stories of Care, Discovery and Outreach from St. Louis Children’s Hospital

about the cover

Mom Latoya, dad Mike and big brother Arihyan celebrate the strength of baby Ari.

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the best care for our kids

Strong, proud and positive: A Heart Center family faces down every challenge.

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out of the hospital, into our neighborhoods

The Family Resource Center knows no bounds

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big advances for our small patients

Owen kicked cancer. Twice!

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special supplement

Guardians of Research: An update for investors of the Children’s Discovery Institute

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letting kids be kids

Hockey with a heart

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featured guardians of childhood: Velma Hunt & Debbie Schrader

an exciting partnership between St. Louis Children’s Hospital and the Washington University School of Medicine designed to transform child health through pediatric research.

Since 2006, the Children’s Discovery Institute (CDI) has launched 184 research studies through funding from its investors. These studies seek novel treatments that break the will of diseases, such as congenital heart defects, childhood cancers, lung diseases and those of the immune or metabolic systems, to interrupt childhood. Research is what has made personalized treatments that target an individual patient’s unique symptoms possible. It has made fighting disease through gene editing or activating a child’s own immune system within reach.

By funding talented researchers and biomedical innovators, you are propelling their findings into clinical practice. By supporting the CDI, our investors have enabled researchers to leverage their discoveries into nearly $300 million in extramural grants from public funding sources, such as the National Institutes of Health.

And there are more discoveries in the pipeline, which is why we’re excited to broaden the audience for CDI research updates through a new supplement that, from this issue forward, will be enclosed in the quarterly Guardians Magazine.

We hope you enjoy reading about the research that is putting Children’s Hospital and the School of Medicine on the leading edge of child health transformation.

With gratitude,

A lifelong memory turns into a legacy of giving

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buzzworthy

News from St. Louis Children’s Hospital

St. Louis Children’s Hospital One Children’s Place St. Louis, MO 63110 314.286.0988 888.559.9699 Copyright ©2017 StLouisChildrens.org

Gary A. Silverman, MD, PhD Executive Director Children’s Discovery Institute

Mary C. Dinauer, MD, PhD Scientific Director Children’s Discovery Institute

The Harriet B. Spoehrer Professor and Chairman of the Department of Pediatrics

Fred M. Saigh Distinguished Chair in Pediatric Research, St. Louis Children’s Hospital

Pediatrician-in-Chief, St. Louis Children’s Hospital

highlights & happenings

Ring, ring, ring go the bells Friends and family of Avery celebrated the end of her cancer treatment with a bell-ringing like no other. When Avery rang the bell at the hospital, a “bellboard” at Highway 44 and Big Bend rang along so that everyone within earshot could celebrate her achievement.

Children’s Hospital patient Amelia and her dog, Miley, had a “barking good time” participating in a video shoot for a national Purina commercial, featuring the Purina Pet Center at St. Louis Children’s Hospital.

Companies in the construction trades really nailed 2017’s KIDstruction Week, raising a record of more than $400,000 for hospital programs and services that make sure no childhood is interrupted by illness or injury for long.

Congratulations to Paric Corporation, pictured here, for making the largest employee contribution and company match for KIDstruction Week 2017.

The St. Louis Children’s Hospital transport team spelled out a huge thank you to area car dealerships that participated in Car Care for Kids, a campaign that raised more than $98,000 to benefit the transport team and the patients it serves.

Special holiday visits Patients enjoyed special visits by Santa and Mrs. Claus, Disney princesses, Fredbird, the St. Louis Blues’ mascot Louie and more as part of the Love Light festival. The annual event, led by the Friends of St. Louis Children’s Hospital, celebrates the switching-on of the hospital’s holiday lights.

Last November’s camp-themed Play Date, one of the hospital’s signature annual fundraising events, raised more than $445,000 for pediatric research through the Children’s Discovery Institute (see supplement). Owen, pictured here, enjoys s’more fun as the evening’s child ambassador (Owen’s story is featured on pages 8-9).

A publication of St. Louis Children’s Hospital

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the best care for our kids

Strong, proud and positive:

A Heart Center family faces down every challenge.

Just a week after Latoya Evans and Arushus (Mike) Coleman celebrated news they were expecting a second child, joy turned to concern when they learned Latoya had breast cancer. She underwent a lumpectomy and then, after discovering the cancer had spread, a mastectomy.

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Guardians Magazine Winter 2018

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nbeknownst to Latoya and Mike, another trial lurked. During a 23-week ultrasound, doctors diagnosed their baby with a congenital heart defect.

“Any concerns and worry about my health were put on the back burner that day,” Latoya says. “I knew I needed to be strong for my baby.”

At the St. Louis Children’s and Washington University Heart Center, clinicians have long recognized the emotional toll on families who learn their baby will be born with a heart defect. “Yet, because we are so focused on the medical end of things, we can easily forget to check in with families to see how they are doing emotionally,” says Kym Galbraith, RN, nurse coordinator.

In fact, Latoya reports that during the first few weeks of Ari’s struggle, which included surgery on her heart shortly after birth, she broke down every day. She, like other parents of children treated at the Heart Center, could never feel rested or at ease while seeing her newborn being put Latoya Evans, Ari’s mom through so many medical procedures to keep her alive.

Having experienced those challenges first-hand, Mark and Jennifer Hinkle, founders of the Ollie Hinkle Heart Foundation; and Jared and Adrianne Neville, founders of Eden’s Army, joined forces to bring the robust Perinatal Behavioral Health Services program at Washington University School of Medicine to the Heart Center. This service, which already has been successfully implemented by the hospital’s newborn intensive care unit, allows the hospital to provide the extra care parents need to develop coping strategies and feel supported emotionally so they can remain strong advocates for their babies.

“Funding for this program is essential,” says Caroline Lee, MD, the director of the Fetal Heart Center (a part of the Heart Center). “Because there aren’t many clinicians who specialize in providing perinatal behavioral health support, it’s vitally important that we increase the access to that kind of care so it can be delivered at the right time.”

As a result of Latoya’s cancer diagnosis and treatments and Ari’s lengthy and complicated hospital admissions, Latoya exhausted the medical leave time granted by her employer. In spite of the extra challenges that come with having to take unpaid leave to attend to Ari’s complex needs, Latoya and Mike credit the Heart Center staff for helping them remain strong, proud and positive, with an unwavering focus on the needs of their family.

“Because of all the support we receive from the Heart Center staff,” says Latoya, “we have never felt the need to give up hope.”

The Heart Center team, Ari and her family celebrate the generous gift from the

Because of all the support we receive from the Heart Center staff, we have never felt the need to give up hope.

Ollie Hinkle Heart Foundation.

A publication of St. Louis Children’s Hospital

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out of the hospital, into our neighborhoods

The Family Resource Center knows no bounds when it comes to giving parents information they need to best care for their children.

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Guardians Magazine Winter 2018

Rita Taylor, BSN, RN, shares a book from the juvenile collection with a Family Resource Center visitor.

Wouldn’t it be amazing if parents everywhere had the same level of support and access to resources and information about their children’s health as parents whose children are admitted for inpatient care?

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hanks to donor funding, they do. The Family Resource Center (FRC) — where parents of Children’s Hospital patients can go to find answers to their questions from health information nurse specialists and a consumer health librarian — offers itself up as a local, regional and, yes, national and international pediatric knowledge base.

“We are here to vet and verify both print and online resources to ensure families who come to us for answers obtain the most accurate medical information on their child’s condition,” says Alissa Haycraft, MSN, RN, CPNP, clinical lead for the FRC. “So much information is available through the Internet that it’s difficult to determine which health resources are reliable. So often, parents will come to us with information they found online that is misleading or even potentially detrimental to their child. We work to help them find evidence-based information on their child’s diagnosis or put them in contact with a subject matter expert to help them navigate what’s next more confidently.”

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CPR participants

Recently, the family of a transgender 5-year-old from the community visited the FRC requesting information on next steps in the child’s transition. The parents, who were supportive of their child, were thrilled with the tools the FRC suggested to help prepare for future medical visits. The FRC staff recommended books to read and information to help other family members understand their child’s journey.

“We can send parents sites best suited to answering their questions and mail or e-mail them printed materials and bibliographies,” Haycraft says.

In addition to referring their patients to the FRC for information, community physicians often request information on specific topics to give their patients and families.

For more information or to support the Family Resource Center, visit StLouisChildrens.org or call 314.454.2350.

total interactions by the Family Resource Center in 2017

241

literacy consults

1,840

collection items checked out

4,880

business center services used

A publication of St. Louis Children’s Hospital

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big advances for our small patients

Owen’s future is as bright as the stars on his hat.

Owen kicked cancer.

Twice!

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Guardians Magazine Winter 2018

During a routine surgery to repair a hernia, Owen Williams’ doctors found something much more menacing: a tumor in the 3-year-old’s bladder. A few days later, they confirmed a diagnosis of rhabdomyosarcoma, a cancer of the soft tissue.

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f course, we were devastated,” says his mom, Bree. That is until Owen’s doctors said they were confident that they could cure him with 48 weeks of chemotherapy and six weeks of radiation, and they were right. “We felt so lucky that Owen had such an amazing team of oncologists at St. Louis Children’s Hospital.”

Unfortunately, Owen’s remission lasted only five years. In August of 2016, doctors discovered a much larger tumor growing in the same area of his bladder. The Williams family was told that recurrences of rhabdomyosarcoma were extremely difficult to treat.

“To be told that your child would have to go through the biggest fight of his life with only a 10 percent chance of survival is just awful,” Bree says.

Siteman Kids at St. Louis Children’s Hospital oncologist and researcher Dr. Jeffrey Bednarski proposed enrolling Owen in his clinical research trial. Owen and his family agreed to the trial’s aggressive and highly experimental treatment that included chemotherapy, surgery and then more rounds of high-dose chemotherapy to eradicate any remaining tumor cells from his body. Those steps, Dr. Bednarski explained, would essentially destroy Owen’s bone marrow stem cells, rendering him in need of a stem cell transplant. Owen had that transplant on December 12, 2016, went home January 12, 2017, and has been in remission ever since.

“Without research and philanthropic support, we wouldn’t be able to conduct the studies that help give kids like Owen another chance,” Dr. Bednarski says. “Our hope is that personalized treatment plans, like Owen’s, become our future.”

Owen and his family are grateful for the generosity of the many people who helped make their experiences at Children’s so positive.

His brothers still ask if they can go back to play in the Sibling Playroom, created and fully funded with donor support.

Owen has been through more than most kids his age. “Owen is, and always will be, a survivor, but there’s so much more to him than that,” says Bree. “He’s a great big brother to his three younger brothers, and a wildly imaginative boy who loves harder than anyone I’ve ever met.”

Owen’s family had much to celebrate during Thanksgiving 2017 (above), including his second, and hopefully final, bell ringing to mark the end of successful cancer treatment (left).

Without research and philanthropic support, we wouldn’t be able to conduct the studies that help give kids like Owen another chance.

Dr. Jeffrey Bednarski

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Guardians of Research

New breakthroughs in childhood leukemia Siteman Kids at St. Louis Children’s Hospital is among the first to offer breakthrough cancer treatment that turns a child’s immune system into a cancer fighter.

Shalini Shenoy, MD; Robert Fulton; John F. DiPersio, MD, PhD

Siteman Kids at St. Louis Children’s Hospital is one of the first U.S. centers to offer a breakthrough pediatric cancer treatment in recent months.

CAR-T immunotherapy harnesses a child’s own immune system to fight cancer. The FDA approved the therapy in August 2017 as a defense against an aggressive form of acute lymphoblastic leukemia (ALL) in children who have not responded to standard therapies or whose cancer has relapsed.

A person’s immune system normally fights disease and infection. However, in cancer patients, specialized immune cells called T-cells lose the ability to

Nearly $3.5 million in new grant funding 11 The head-heart connection 12 The science and the stories 13

recognize and attack cancer cells. With CAR-T therapy, a patient’s own T-cells are isolated from the blood. Those cells then are genetically altered — or supercharged — enabling them to home in on cancer cells and destroy them. During this process, specialized receptors, called chimeric antigen receptors, are put onto patients’ T-cells.

When the immune cells are infused back into patients, these receptors allow the cells to recognize and attack tumor cells, thus turning the T-cells into cancer-fighting machines. These supercharged cells also stay alive and in circulation in the patient’s body, lending added protection for years.

Washington University pediatric oncologists with extensive experience in treating leukemia will administer the CAR-T immunotherapy through the Siteman Kids program at St. Louis Children’s Hospital.

“If it looks like the leukemia is not responding to treatment or relapsing, the CAR-T cells can attack it all over again using a different mechanism than chemotherapy,” explains Shalini Shenoy, MD, a Washington University pediatric hematologist/oncologist and director of Siteman Kids at St. Louis Children’s Hospital. “We think this is just the beginning for this kind of therapy.

If we can make a patient’s own cells smart enough in more cancers, and we think we can, we believe we’ll be able

to tackle even more types of cancer with immunotherapies in the future.”

Clinical trials have shown that in children with aggressive B-cell ALL who have not responded to standard therapies or have relapsed, CAR-T therapy has achieved more than an 80 percent remission rate. Some patients have remained in remission for more than five years. While the treatment is considered a major advance in cancer treatment, CAR-T therapy induces a heightened immune response that can lead to a range of side effects, some of which can be severe.

“Because of the potential side effects, it’s important that patients undergoing CAR-T therapy are watched closely by physicians and care teams with extensive experience in blood cancer therapy and bone marrow transplantation,” Shenoy says.

Research into the potential of CAR-T therapy continues. The Children’s Discovery Institute (CDI) — a research partnership between St. Louis Children’s Hospital and Washington University School of Medicine — has invested $360,000 toward further investigation into these life-saving therapies. For this effort Dr. Shenoy has joined John DiPersio, MD, PhD, the Virginia E. and Sam J. Golman Professor of Medicine in Oncology and deputy director of CONTINUED ON PAGE 13

ChildrensDiscovery.org

AN UPDATE FOR INVESTORS OF THE CHILDREN’S DISCOVERY INSTITUTE

The CDI approves nearly $3.5 million in new funding

Studies spanning an array of childhood diseases launched in February 2018.

The CDI board of managers recently voted to fund 10 new pediatric research studies, which launched in early February.

Ana Maria Arbelaez, MD, pediatrics; and Christopher Smyser, MD, neurology, seek to understand the neurodevelopmental consequences of malnutrition in children. The researchers and their collaborators will use their funding to expand a previous CDIfunded pilot study in Cali, Colombia.

New funding from the CDI will pave the way for Jacco Boon, PhD, medicine, and Daisy Leung, PhD, pathology and immunology, to use advanced sequencing techniques to develop a much-needed RSV vaccine. In a previous CDI-funded study, Dr. Leung played a key role in mapping the molecular structure of an RSV protein that interferes with the body’s ability to fight off the virus.

Leveraging her understanding of the molecular mechanisms of immunodeficiency, Megan Cooper, MD, PhD, pediatrics and pathology and immunology, will use whole exome sequencing to uncover personalized precision therapies based on the specific mutations causing a child’s immune disorder.

Could an inexpensive and readily available nutritional supplement, known as CoQ10, be the secret to preventing severe bacterial pneumonia in some children? CDI investigator Celeste Morley, MD, PhD, pediatrics,

will seek to answer that question using a mouse model with a variant in a gene known to activate the enzymes the body needs to produce CoQ10, an antioxidant.

Does adversity become “biologically embedded” in a child, leading to disparities in health outcomes? A new study by Barbara Warner, MD, pediatrics, and Joan Luby, MD, psychiatry, will investigate the degree to which psychosocial stress, such as poverty, of a mother during the prenatal period or early infancy alters the microbial makeup of the baby’s gut and, in turn, his or her immune system health and inflammatory response.

With his funding, Timothy Wencewicz, PhD, chemistry, will take on mycobacteria and short circuit their ability to resist antibiotics used to fight Mycobacterium tuberculosis (Mtb), which infects more than a million children annually. In children with cystic fibrosis, the inability to clear another type of mycobacteria from the lungs renders them unable to receive lung transplants. Dr. Wencewicz is taking an innovative approach to improve treatment results.

Xunjun Xiao, PhD, MS, pediatrics, and Stephen Pak, PhD, pediatrics, will study how inherited mutations in a pancreatic

digestive enzyme cause a cellular response that leads to chronic pancreatitis. Greater understanding of this disease, which can result in diabetes, chronic pain and the inability to digest food, could lead to effective therapies, which are currently lacking.

In this round of funding, infectious disease specialist David Rosen, MD, PhD, pediatrics, received a CDI Faculty Scholar award to lead a study of Klebsiella pneumonia to uncover its vulnerabilities for vaccine development.

Two post-doctoral fellowship awards were also given this round. Harshad Ingle, PhD, medicine, will study how malnutrition affects the microbial makeup of a child’s gut and leads to severe virus-induced diarrhea. The second award was granted to Kel Vin Woo, MD, PhD, pediatrics, to find ways to protect vulnerable pre-term infants from pulmonary hypertension using mouse models.

“This robust list of newly funded projects builds upon the success of previous or ongoing investigations conducted by CDI investigators,” says CDI scientific director Mary Dinauer, MD, PhD, the Fred M. Saigh Distinguished Chair of Pediatric Research at St. Louis Children’s Hospital.

“Each has the potential of being transformational for pediatric medicine.”

Guardians of Research

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Guardians of Research

The head-heart connection In search of the best way to protect the brain development of children with congenital heart disease.

Dr. Cynthia Ortinau

We were one of a select few centers around the country doing this type of work to advance fetal brain imaging, especially in babies with congenital heart disease.

Dr. Cynthia Ortinau

St. Louis Children’s Hospital neonatologist Cynthia Ortinau, MD, has seen the pain expectant parents go through in learning their baby has a serious heart defect. It’s a difficult conversation that gets even harder when telling parents about the link between congenital heart defects and developmental delays.

“Right now, we can tell parents what to expect in terms of the surgical and medical interventions available for their newborn’s heart condition. Unfortunately, we can’t do the same for their long-term brain development,” Dr. Ortinau says.

“That uncertainty is what drives us to learn more about how and why brain development is different in these babies.”

The ultimate goal of Dr. Ortinau’s CDI research that began in February of 2013 was to one day be able to change that conversation. Her hope is to be able to say: “yes, your baby has a heart defect that we’ll begin treating, and here’s what we are going to do to protect your baby’s brain development along the way.”

For her CDI pilot study, Dr. Ortinau’s research team recruited 39 patients who had an MRI of their baby’s brain before birth. Follow-up imaging and developmental testing took place after the children were born. This study was groundbreaking because it showed the feasibility of using MRI technology on babies before they are born.

“The study required us to come up with special protocols to capture pictures of a baby’s brain while the baby was moving around inside of the mother,” Dr. Ortinau says. “We are one of a select few centers around the country doing this type of work to advance fetal brain imaging, especially in babies with congenital heart disease.”

Shortly after launching this project, Dr. Ortinau decided to move her work to Brigham and Women’s Hospital in order to continue her mentoring relationship with Terrie Inder, MD, a pioneer in the use of MRI scans of premature infants to predict future delays in development. In Boston, Dr. Ortinau worked with a large team studying cardiac neurodevelopment, and together with a pediatric neurologist at Boston Children’s Hospital, Dr. Ortinau began another fetal MRI study. Preliminary results from both her CDI pilot study and the Boston project have shown that differences in brain development begin early in pregnancy for babies with heart defects. These include differences in brain size and how the outer part of the brain folds.

After gaining valuable experience working with experts in cardiac neurodevelopment and fetal imaging, Dr. Ortinau returned to St. Louis, where the work she began in 2012 has continued with funding from a new CDI study launched last July. “The initial CDI-funded pilot study was key to designing the project in Boston. Then, what I learned from my work there was used as a platform to build on my new research here. It has come full circle,” Dr. Ortinau says.

“We were thrilled to welcome Cynthia back into our fold,” says F. Sessions Cole, the Park J. White, MD, Professor of Pediatrics at the Washington University School of Medicine and director of newborn medicine at St. Louis Children’s Hospital. “Her CONTINUED ON NEXT PAGE

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A publication of the Children’s Discovery Institute

AN UPDATE FOR INVESTORS OF THE CHILDREN’S DISCOVERY INSTITUTE

The science and the stories The 2017 CDI symposium struck the right balance of both.

CDI investigator Todd Fehniger, MD, PhD, explains research that promises to give children with a recurrence of leukemia a better chance.

An evening of science and stories captivated the nearly 200 guests at the 10th annual CDI Investor Symposium on Nov. 2, 2017. The photos tell the tale of inspired engagement between the CDI investors, the researchers they support and the families of those they impact.

“What made this year’s symposium so meaningful was the full incorporation of patient stories to help highlight the importance of the important research we fund,” says Malcolm Berry, chief development officer, St. Louis Children’s Hospital Foundation.

Save the Date for the 2018 CDI Symposium: Thursday, November 1 DETAILS TO COME

New breakthroughs in childhood leukemia CONTINUED FROM PAGE 1 OF THIS SUPPLEMENT

Siteman Cancer Center; Matthew Cooper, PhD, an instructor in medicine; and Robert Fulton, an assistant professor of genetics and a scientist at the McDonnell Genome Institute.

The team members will use their CDI funding to develop several new treatments. They hope to produce an “off-the-shelf” CAR-T therapy product that prevents CAR-T cells from attacking each other or non-cancer cells in the patient. They will also innovate new strategies to overcome a life-threatening side effect of CAR-T therapy called cytokine release syndrome (CRS), and create a novel “suicide gene” that will track and eliminate CAR-T cells in the body, if needed, using a unique form of positron emission tomography (PET) scanning. “Siteman Kids is equipped to manage the therapy, which is why our center is among the first to offer it,” Dr. Shenoy says.

The head-heart connection CONTINUED FROM PREVIOUS PAGE

passion for ensuring our newborns have a fighting chance for healthy, happy, productive lives coupled with her intellectual curiosity will help improve the way we care for these babies and the understanding of the science behind it.”

One of the differences in the two CDI studies is that Dr. Ortinau is now trying to focus more on why brain development is different in babies with heart defects. There are two potential mechanisms she believes are important.

The first is that the heart defect likely affects how blood flow and oxygen are delivered to the brain. The second is

that different genetic makeups may lead to abnormal development of both the heart and brain. In the first CDI study, Dr. Ortinau’s team recruited only patients with isolated heart defects, meaning they had no other diagnosis.

The second study will involve collecting data on all patients with heart defects, even those with other types of birth defects, and will include genetic testing.

“A broader cohort, with the incorporation of genetic testing, will help us begin to understand the role different genetic variants play in both heart and brain development,” Dr. Ortinau says. “We will be able

to see what the brains of different patients with different genetic variants look like in the hopes that we will begin to find patterns. At the same time, measurements taken on blood flow and oxygen to the brain will help us narrow in on the physiological differences in the brains of these children.”

Dr. Ortinau hopes all this testing will lead to a day when expectant parents can leave their prenatal counseling session with peace of mind, knowing that no matter what must be done to repair their baby’s heart defect, their ability to learn, communicate, play and live their best life will be protected.

Guardians of Research

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letting kids be kids

Hockey with a heart

They might be tough on the ice, but recent events clearly reveal the St. Louis Blues to be heartmelting Guardians of Childhood.

The partnership between the local NHL team and St. Louis Children’s Hospital makes generosity look like child’s play.

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Blues defenseman Colton Parayko visits with patients.

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Guardians Magazine Winter 2018

n late 2016, the Blues and the NHL, in partnership with Companions in Courage, unveiled a newly-renovated teen lounge at St. Louis Children’s Hospital. The hangout, called the Lion’s Den, allows patients to interact with friends and family in ways they otherwise may not have been able to while in the hospital.

The lounge is equipped with new computers, Skype capabilities and video games.

“The work we do with Children’s is without a doubt one of the most rewarding things we are involved in,” said Blues president and CEO Chris Zimmerman at the lounge’s ribbon cutting. “The fact that a sports team can give back in a way that gives a little bit more joy and helps kids fight their tough battles is really, very special.”

More recently, during Halloween in 2017, the Blues invited patients to Scottrade Center to trick-or-treat in the players’ locker room after practice. Players greeted them with candy, jerseys and autographed hockey sticks. And over the 2017 holiday, six patients and their families were invited to join Blues forwards Paul Stastny and Kyle Brodziak and his family for a ride on the Polar Express at Union Station. The kids were treated to chocolate chip cookies, a train ride through St. Louis, a stop at the “North Pole” and a visit from Santa.

Blues mascot Louie and defenseman Robert Bortuzzo give a thumbs-up to their patient visit.

That festivity was preceded by an invitation for patients to Scottrade for a Hockey Fights Cancer “press conference” with the team. This time, our kids battling cancer asked the pressing questions, such as: “Who’s the smelliest?,” “Are you on Snapchat?” and “What motivates you to play hockey?”

The generosity continues in 2018, starting with a Blues-hosted Casino Night that will benefit Children’s Hospital.

Between these events, Blues players are known to pop into the hospital to visit patients and pass out signed jerseys or game pucks.

“All these interactions support the social and emotional needs of our kids,” says Malcolm Berry, chief development officer of St. Louis Children’s Hospital Foundation. “It’s a true testament to the character of this organization and its players, and we are tremendously grateful for their steadfast commitment to creating enriching experiences so that kids can be kids.”

Blues players and representatives participate in the ribbon-cutting of the Lion’s Den, the hospital’s popular teen lounge.

A publication of St. Louis Children’s Hospital

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featured guardians of childhood: Velma Hunt & Debbie Schrader

A lifelong memory turns into a legacy of giving

In 1958, a 2-year-old named Debbie contracted polio. The youngest of six, the toddler was sent from her home in Pinkneyville, Illinois, to St. Louis Children’s Hospital, where she was quarantined from family and friends, as was the practice at that time. It’s a traumatic experience that has stayed with Debbie, even to this day. Always swirling around that bank of memories has been a kind caregiver who would come to her room to give her a bottle and provide some extra tenderness. “She was the one light in my life when I was in isolation from the world,” says Debbie. “That little bit of comfort meant so much.”

Velma Hunt now and then

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Guardians Magazine Winter 2018

Debbie Schrader and Velma Hunt reunite.

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ast-forward to 2017 and a conversation Debbie had with a St. Louis Children’s Hospital Foundation staff member, Jan Rogers, about why she and her husband, Ralph, decided to include Children’s Hospital in their estate plans.

“In listening to her story, I knew the person Debbie remembered so fondly,” Jan says.

Velma Hunt, now 89, just celebrated her 60th anniversary at St. Louis Children’s Hospital. The longestserving employee of the hospital, she works part-time, providing compassion and comfort to frightened patients and their families in the hospital’s emergency department.

Jan arranged a reunion last summer. It was an emotional visit for both women.

The Emergency Department team celebrates Velma’s 60 years of caring.

“I never forgot you,” Debbie told Velma. “I have always thought about you and wondered who you were.”

Velma was gracious, expressing how much it meant to her that Debbie remembers her so many years later.

Debbie left Velma with an antique handkerchief with the letter V embroidered onto it, as well as a

necklace — a heart within a heart — symbolizing how Velma’s big heart soothed Debbie’s 2-year-old heart at a time she needed it most.

These two women, one whose comforting presence led to a legacy gift to St. Louis Children’s Hospital by the other, now plan to stay in touch as fellow Guardians of Childhood.

A publication of St. Louis Children’s Hospital

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buzzworthy

How one donor family is making a difference for patient families in the new tower at Children’s Hospital

Hospital expansion to include donor-funded wellness center

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t’s going to be an exciting 2018 for staff, patients and families at St. Louis Children’s Hospital.

With the opening of the 12-story, 222,000-square-foot Children’s Hospital expansion featuring a new patient care tower, comes new facilities designed to incorporate the most advanced approaches to patient care, comfort and safety.

The Jackson Hill Wellness Center is one of the new amenities available for use by families whose children are hospitalized in the expanded hematology/oncology unit, and it wouldn’t have been possible without the generous support of the Jackson Hill Foundation.

The Jackson Hill Foundation was established by Melissa and David Hill in memory of their son, Jackson, who died of osteosarcoma at the age of 12. Jackson loved the outdoors and all sports, and his family lives an active lifestyle. During Jackson’s long hospitalizations,

the family longed for a place in the hospital where they could get some exercise to care for themselves and manage their stress while staying close to their son. Through their foundation, they have found a fitting way to honor Jackson’s memory while caring for other families who now travel a similar journey.

“It was Jackson’s wish that we make a difference for families of hospitalized children,” say Melissa and David Hill. “To honor his legacy, we wanted to offer the highest quality experience and equipment for families who use the Jackson Hill Wellness Center.

Families deserve a respite from hospital stress, and we are thrilled to welcome patient families to our beautiful center overlooking Forest Park.”

The Jackson Hill Wellness Center opened in late January and features a Woodway treadmill, weights, resistance bands, mats and other equipment, as well as a large-screen television with access to a variety of wellness and fitness videos.

Thanks to the foundation’s annual Run & Run S’more 5K event, the Jackson Hill Foundation is establishing a named endowment to support the ongoing operations of its wellness center.

For information on Run & Run S’more, visit runandrunsmore.com/st-louis.

Above: Melissa and Jackson Hill; left: The Jackson Hill Wellness Center

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Guardians Magazine Winter 2018

buzzworthy

Children’s opens first pediatric convenient care location

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n December 2017, St. Louis Children’s physicians. If needed, we also will help Hospital opened its first schedule follow-up appointments at convenient care location at Children’s Hospital. Our goal is to 12436 Tesson Ferry Road in South support pediatricians’ role as a St. Louis County. St. Louis medical provider for their patients.”

Children’s After Hours™ is the A nurse practitioner and only non-emergency, lowerpediatric nurse staff the center acuity care center of its kind in from 5 p.m. to midnight, the area, designed and staffed Monday through Friday; and specifically for pediatric noon to midnight, Saturday patients. It is the first of several and Sunday. Limited laboratory conveniently located centers services are available and select that will open in coming months. holiday hours.

“Families now have access to “A real advantage for families is that facilities that offer high-quality, our centers have less expensive co-pays kid-focused care provided by those than urgent care centers, retail clinics or (L-R) After Hours pediatric experienced in treating children and emergency room visits. Billing will be the nurse practitioners Cheryl Grave, adolescents,” says Cheryl Grave, RN, same as if they are visiting a primary care Elizabeth Schickler and Allison Hunt CNP, manager of the After Hours provider,” says Grave. program. “Because these close-to-home centers will For additional information, please call provide services when most pediatrician offices are 314.454.KIDS or toll-free at 800.678.KIDS. closed, we have established a seamless process by Or visit StLouisChildrens.org/AfterHours. which we will follow up closely with primary care

New SLCH helicopters

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t. Louis Children’s Hospital recently debuted two new helicopters in its air ambulance fleet. These state-of-the-art aircraft replace two other helicopters — Kids Flight 1 and Kids Flight 2 — that have been in service for nearly 30 years, transporting kids who need them the most.

The two new helicopters can fly for three hours without refueling thanks to their larger fuel tanks. There is more room, both for the medical crew and for storing more equipment, like specialized ventilators for premature babies who may otherwise not survive a long trip.

“Those kids don’t have a whole lot of reserve left,” says flight nurse Angie Dreisewerd. “Every single minute for them counts. Driving to a hospital two hours away when you can get there in 30 to 35 minutes sometimes is super important.”

Transport team members prepare for take-off.

A publication of St. Louis Children’s Hospital

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Save the date

Mark your calendars for the following 2018 events supporting St. Louis Children’s Hospital.

Friday, March 23

Cocktails and Clowns

Monday, June 4

Joe Buck Golf Classic

Wednesday, April 18

Thursday, November 1

Table Tops Spring Event

CDI Symposium

Friday, June 1

St. Louis Children’s Hospital Day at Six Flags

Saturday, November 17 Guests of St. Louis Children’s Hospital Day at Six Flags proudly sport the 2017 event T-shirt.

Play Date