Guardians magazine Spring 2018

Children’s Discovery Institute research supplement inside

Guardians Spring 2018

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

Meet one lucky little guy see page 8

Doing What’s Right for Kids!

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Giving families the best possible start

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Adaptive toy lending library

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Helping families find their way

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

about the cover

A team of 35 specialists performed the first in-utero spina bifida surgery at Barnes-Jewish and St. Louis Children’s hospitals, turning worry into wonder.

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the best care for our kids

Giving families the best possible start

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out of the hospital, into our neighborhoods

Living our values Advocacy and outreach report

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big advances for our small patients

Meet one lucky little guy

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special supplement

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

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letting kids be kids

Adaptive toy lending library puts therapeutic play in the hands of every kid

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From Malcolm Berry Chief Development Officer at St. Louis Children’s Hospital Foundation Thank you for believing in Children’s.

The last issue of Guardians told the story of Latoya Evans, a new mom who has been able to stay strong and positive with extra support from our Heart Center staff. Funding from two family foundations made possible the creation of a perinatal behavioral health services program for Heart Center families. These families struggle through lengthy and complex hospitalizations, but always know they are not fighting alone.

In this issue, we stay on the topic of protecting the most vulnerable among us: newborn infants. At St. Louis Children’s Hospital, we do everything we can to protect newborns and give them a fighting chance for a healthy, productive life. If that means literally building a bridge between labor and delivery and the newborn intensive care unit, we have done it. If that means building a bank of samples to study how an infant’s gut microbiome develops, we’ve have done that, too. If that means seeking a greater understanding of how adversity can change the trajectory of a child’s life from his first waking breath, then we pursue it. And if that means correcting a defect even before the child is born, we are on it.

But there is so much more to be done to protect infants, children and families in need. And it just makes sense that as Guardians of Childhood, St. Louis Children’s Hospital takes the lead with the support from our community of donors.

featured guardian of childhood: nurse navigator

Helping families find their way

With gratitude,

Malcolm Berry

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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

highlights & happenings

Blues casino night Hosted by Blues for Kids, the charitable trust of the St. Louis Blues, the casino night featured Blues players, coaches and alumni as celebrity dealers to raise funds for St. Louis Children’s Hospital.

St. Louis band The Matching Shoe provided the musical entertainment, and tickets included tastes from the St. Louis Originals, an open bar featuring a Woodstock-themed Peace Punch and Flower Child Martinis, and $5,000 in casino bucks to test the participants’ luck in the casino games dealt.

Julia, our 2018 March to the Arch patient ambassador, shared her story at the event held on March 29. This 8-year-old who’s fighting cancer for the second time said, “St. Louis Children’s Hospital, along with Dr. Huang, was the best choice for me. The nurses and Dr. Huang always help me feel better and cheer me up when I’m scared.”

Hosted by the Friends of St. Louis Children’s Hospital, Table Tops Spring Event is a one-of-a-kind luncheon, raising money this year for music therapy. More than 600 guests enjoyed boutique shopping and the creativity of 50-plus local designers who decorated elaborate tables paying homage to their favorite childhood song. The afternoon’s program featured the hospital’s music therapist, Christy Merrell. This year’s event co-chairs were Carolyn McKee (left) and Susie Meyer.

With the addition of the Healthy Kids Express Sprinter Van to our community health outreach fleet, Children’s Hospital nurses are able to provide vision, hearing and physical health screenings in community centers, child development centers and schools that our larger Healthy Kids Express mobile units were previously unable to reach. A special thanks to Gateway Plaza Motors for this gift that will truly transform the health of children across St. Louis.

Thank you to the Jackson Hill Foundation for hosting the 3rd Annual Run and Run S’more event in Ladue on February 24! The event raised $25,000 for the Jackson Hill Wellness Center at St. Louis Children’s Hospital.

Cocktails and clowns At the March 23 premier cocktail event hosted by the Young Friends of St. Louis Children’s Hospital, the Clown Docs showed some love for their founder and former Children’s Hospital

president Ted Frey and his wife, Billie. A crowd of 500 swirled around them, enjoying an evening of mixology, music and more.

This year’s event chair was Brad Schmidt.

A publication of St. Louis Children’s Hospital

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the best care for our kids

Alison Cahill, MD (left), Barb Warner, MD (credit Matt Miller)

Giving families the best possible start

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he first moments of life for critically ill infants born at Barnes-Jewish Hospital entail an urgent transport from the labor and delivery room to the newborn intensive care unit (NICU) at St. Louis Children’s Hospital. But now, due to the newly completed high rises on the Washington University Medical Campus, the commute will be reduced to seconds.

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Guardians Magazine Spring 2018

That’s thanks to the opening of the new Women & Infants Center, which features a labor and delivery floor that connects via a skywalk to the NICU in a new St. Louis Children’s Hospital tower.

“For patients and their families, and for those of us who care for them, the new facility is game-changing in the best possible way,” says Barbara B. Warner, MD, pediatrics, a Children’s neonatologist who cares for infants in the NICU. “The design helps us to be more immediate, efficient and able to provide the best care possible. It also offers calmness and comfort for women, infants and their families, allowing them to focus on their monumental life changes.”

Fostering the infant-parent bond motivated the design of the new center, which, in addition to labor and delivery, includes 34 private postpartum inpatient beds in wide rooms with sleeper sofas for family members. Near each room’s entrance are drawers fully stocked with supplies for diapering and feeding. Retractable curtains and rolling bassinets offer privacy and encourage mother-baby bonding.

“The setup is conducive to breastfeeding and hands-on infant care,” Dr. Warner says. “The skywalk connecting labor and delivery with the NICU also gives critically ill infants the best conditions for improved health.”

The creation of this innovative center promises to position us as a national leader in obstetrics.

F. Sessions Cole, MD, director of newborn medicine and chief medical officer at St. Louis Children’s Hospital

Previously, it could take almost 10 minutes to transfer critically ill infants to the current NICU at St. Louis Children’s from Barnes-Jewish. “Now, the distance is about 25 yards from labor and delivery to the new NICU,” says Alison Cahill, MD, director of maternal-fetal medicine at Barnes-Jewish. “No time is wasted in caring for mothers and babies. Every second counts in lifesaving situations.”

Such efficiency is expected to result in less time moving or getting to patients, which will translate into more time for patient care.

“The rooms are designed to bring exceptional medicine to patients, from the healthiest to the sickest,” Dr. Cahill says.

The expansion of the Children’s Hospital NICU adds 40 beds, bringing the total to 125 beds, most in private rooms. The addition also adds space for pediatric intensive care beds.

“Given the increasing lack of access to quality prenatal care, late pre-term births, prevalence of low birth weight infants, births to teenage mothers and infant mortality, we knew we needed to take a leadership role in creating better clinical outcomes and better overall health for mothers and their newborns in the region,” says F. Sessions Cole, MD, director of newborn medicine and chief medical officer at St. Louis Children’s Hospital. “The creation of this innovative center promises to position us as a national leader in obstetrics.”

Skywalk between labor and delivery and the NICU

Article source: Kristina Sauerwein, Washington University School of Medicine Public Affairs

A publication of St. Louis Children’s Hospital

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out of the hospital, into our neighborhoods

Living our values

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t. Louis Children’s Hospital has made a commitment to advocacy beyond the hospital setting by investing human and fiscal capital in health care services and education for families and children in need. The Child Health Advocacy and Outreach (CHAO) department provides health-related resources and education to families and communities in the St. Louis region to help keep them healthy and safe.

Our commitment to a region that values equal access and equity is the driving force for our programs, as well as for creating a diversity and inclusion department.

CHAO is honored to provide quality, evidence-based programs. Healthy Kids Express dental and asthma, Safety Street, Safety Stop and Head to Toe have all been reviewed and graded by Healthy Communities Institute, with all other programs currently pending review. Providing quality, effective community outreach and programming is an important part of our commitment and mission to do what’s right for children, their families and our region.

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Guardians Magazine Spring 2018

St. Louis Children’s Hospital Child Health Advocacy and Outreach

by the numbers 2016-2017

448

Enrolled in Healthy Kids Express asthma program

5,874

Visits to Healthy Minds nurses in schools

68,622

Heath screenings performed

20,000

611

Teen outreach students served

525

Dental cases resolved

Safety Street elementary school students learning injury prevention behaviors

212

Home safety consultations

220

Head-to-toe weight management program participants

121

Families enrolled in Raising St. Louis— bridging health and social challenges

320

Helmet fittings

1,849

Safety Stop car seat consultations A publication of St. Louis Children’s Hospital

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big advances for our small patients: jackson’s story

Meet one lucky little guy 8

Guardians Magazine Spring 2018

At their 19-week ultrasound, first-time parents Joni Reinkemeyer and Chris Skain were hoping to find out the gender of their baby to share at a reveal party planned for that weekend. The ultrasound technician confirmed that Joni was having a boy. But that wasn’t the only news Joni and Chris received that day.

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oni’s doctor told the couple their baby had myelomeningocele, a severe form of spina bifida. In babies with this condition, the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common.

The sooner the spinal cord is put back in place and the hole created by its protrusion is closed, the better it is for the baby.

Joni’s doctor recommended the Jefferson City couple have their baby in St. Louis to be near advanced fetal care and the sophisticated newborn intensive care unit (NICU) at St. Louis Children’s Hospital.

Here, they were presented with options. They could choose to have the baby undergo surgery soon after birth, risking further development of the condition. Or, to Joni and Chris’ amazement, they could participate in the first in-utero spina bifida surgery at Barnes-Jewish and St. Louis Children’s hospitals. They were told that findings from a Management of Myelomeningocele study (MOMs), published in the New England Journal of Medicine in 2011, prove that fetal surgery may improve neurological outcomes.

They chose the in-utero surgery.

“Being able to avoid brain surgery on our newborn and increasing his chances of walking were all big factors in our decision,” Chris says.

On October 10, 2017, when Jackson Skain was 25 weeks along in his fetal development, Michael Bebbington, MD, MHSc, along with a team of 35 specialists, performed the surgery.

The new director of the Fetal Care Center of Barnes-Jewish, St. Louis Children’s Hospital and Washington University School of Medicine, Dr. Bebbington had participated in the MOMs clinical trial when he was at the Children’s Hospital of Philadelphia.

Joni and Jackson are getting stronger every day

Joni slowly recovered from her part in the surgery, which involved a large incision for doctors to be able to reach the baby inside her uterus. Then, 10 weeks after Jackson made his debut, he came into the world once again.

Next stop: the NICU, a journey that just became much shorter for new moms and their babies, thanks to the new Women & Infants Center at Barnes-Jewish Hospital and St. Louis Children’s hospitals (see page 4).

“We never thought we would have a baby in the NICU,” Joni says. “But then, we never thought we’d have to perform surgery on that baby even before he was born.”

Quickly, the NICU staff put to rest all of Joni and Chris’ fears about being there. “The NICU was not as scary as we thought,” Joni says.

“The doctors and nurses took time to thoroughly explain what’s going on and what the next steps were. They helped us gain confidence that we could take care of him.”

They were able to test their new skills on New Year’s Day, when they brought Jackson home.

“It was a long journey, and there are many hurdles left to cross, but it’s all worth it,” Joni says.

Being able to avoid brain surgery on our newborn and increasing his chances of walking were all big factors in our decision.

Chris, Jackson’s dad

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Guardians of Research

The outcomes of adversity Do infants born into poverty come into the world at a biological disadvantage? A new CDI study examines the degree to which psychosocial stress in the mother’s prenatal period or in the baby’s early infancy alters the microbial makeup of the baby’s gut and, in turn, his or her immune system health and inflammatory response.

“We call it biological embedding,” says Barbara Warner, MD, a Washington University School of Medicine neonatologist at St. Louis Children’s Hospital. She has partnered with Joan Luby, MD, a School of Medicine child psychiatrist, to study the role, if any, of the gut microbiome in setting up a pro-inflammation environment that makes babies vulnerable to the development of chronic diseases, such as allergies or diabetes, and even harms their developing brain.

The opportunity to conduct this study grew out of a larger March of Dimes study on the School of Medicine campus that enrolled 1,000 women in their first trimester of pregnancy.

Among other things measured and characterized in that study are the levels of stress and adverse life events in the lives of the mothers. With their CDI

Children who are reared in adverse settings... experience physical and mental health problems at a disproportionate rate compared to their peers.

Dr. Joan Luby

Fighting for Willow 11 The faces of precision medicine 12 Save the date: CDI Investor Symposium 13

funding, Drs. Warner and Luby will pick up where the March of Dimes leaves off — at the babies’ birth and until they are age 3.

“We are collecting prenatal and postnatal serum and stool samples on the mothers and babies and are conducting neurocognitive evaluations and MRI scans to measure structural and functional changes in the brains of these babies,” says Dr. Warner.

“What we know,” explains Dr. Luby, “is that children who are reared in adverse settings, who experience deprivation, neglect, even abuse and trauma, experience physical and mental health problems at a disproportionate rate compared to their peers. But now, new data are emerging that suggest a link between adversity and changes in brain development. Our study will investigate the mechanistic pathways that lead to those changes.”

While Dr. Warner studies the microbial content hiding in the biological samples of the study participants, Dr. Luby will be looking at what can be observed. “I will oversee the socioemotional and mental health assessments of the children, measured by such things as child/caregiver interaction under mildly stressful situations,” she says. “By a child’s third birthday, you can see the emergence of psychiatric disorders, such as anxiety or

Barbara Warner, MD (left), and Joan Luby, MD

depression. If the children in this study begin to exhibit any of the disorders, we will investigate whether this can be traced back to their early microbiome.”

“One of the reasons there is such a big interest in the pre- and perinatal microbiome is that it is modifiable,” says Dr. Warner. “We can’t change genetics. But we can try to apply effective interventions for women who bring babies into the world under less than optimal psychosocial conditions. Just by reducing their stress, we may be able to change the trajectory of their babies’ lives.”

ChildrensDiscovery.org

AN UPDATE FOR INVESTORS IN THE CHILDREN’S DISCOVERY INSTITUTE

Fighting for Willow Doctors could tell Willow Tolly why she developed chronic pancreatitis (CP) that was so difficult to manage that she spent more time in the hospital than in high school. The culprit was a genetic mutation that prevents digestive enzymes from doing their job of breaking down food. Instead, this mutation causes the digestive enzymes to digest the pancreas. But no one could offer an effective treatment that would stop the progressive inflammatory disorder. More troubling still for Willow was learning that CP often leads to diabetes, causes chronic pain and the inability to digest food, and increases its sufferer’s risk for developing pancreatic cancer.

So, instead of enjoying a promising cross country and track career and hanging out with her friends, Willow got to know her Children’s Hospital 8 West nurses intimately well.

“They are crazy amazing,” Willow says.

What’s also crazy amazing to Willow is the fact that the Children’s Discovery Institute (CDI) recently funded a research project that will help clinicians understand the pathway between mutant digestive enzymes and a certain type of CP, and then find drugs that can

Stephen Pak, PhD (left), and Xunjun Xiao, PhD

stop the disease before it takes hold.

If successful, the findings will greatly improve the quality of life for many children like Willow.

“Right now, no medical therapy for chronic pancreatitis exists, partly because it is so poorly understood,” says Xunjun Xiao, PhD, pediatrics, and a principal investigator of the study.

The genetic mutation under investigation here is one in a digestive enzyme called carboxyl ester lipase (CEL). Dr. Xiao suspects that the accumulation of this damaged protein kicks off a cascade of cellular responses that leads to CP. For this study, Dr. Xiao proposed introducing a mutated version of CEL into pancreatic cells and observing the havoc it wreaks inside the cells. Then he aimed to pinpoint the potential pathways involved in the clearance of the buildup of those toxic proteins. To help with this study, Dr. Xiao teamed up with co-principal investigator Stephen Pak, PhD, pediatrics, to model this disease in C. elegans, a transparent worm with a short life span, ideal for studying cellular responses to genetic mutations. Dr. Pak has engineered worms producing mutant CEL tagged with a green fluorescent protein from jellyfish to help track the mutant protein

accumulation in live animals. He then will apply an automated screening technique he developed to search for candidate drugs that halt the progression of CP. When the painful pancreatitis attacks became too frequent to manage, Willow’s medical team agreed to send her to Minnesota to a pediatric gastroenterologist who was performing clinical trials on new treatments. There, Willow and her parents were told that because of her unlucky genetic roll of the dice, her only hope was to have a total pancreatectomy, involving the removal of the pancreas, spleen, gall bladder, appendix and part of the intestines.

“I didn’t even know you could live without your pancreas,” Willow says.

In fact, you can, but not without complications, as she learned in the months following her return home to Edwardsville, Illinois.

“I was doing great. I had used summer school to make up what I missed my almost-entire junior year and was sailing through my senior year,” she said.

That is, until her second semester.

While her friends were gearing up for prom, graduation and that wonderful CONTINUED ON PAGE 13 Guardians of Research

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Guardians of Research

The faces of precision medicine Throughout the Washington University School of Medicine campus, CDI-funded pediatric researchers are advancing the ability to provide every child with a personalized treatment for their illness. And the word is getting out. CDI seed funding for high-risk, high-reward research has garnered international attention from public and private funding sources, allowing it to attract top talent to its labs and fueling the momentum needed to transform pediatric health care. Below are two examples.

Striking recurring cancer with advanced sequencing In 2014, Todd Druley, MD, PhD, pediatrics, applied for a CDI research grant intended to detect residual acute myeloid leukemia (AML) after treatment. Flow cytometry, the test used for this purpose, just wasn’t sensitive enough to catch each and every lurking cancer cell that could lead to tragic outcomes. Dr. Druley proposed using error-correcting sequencing (ECS), developed in his lab, to find rare genetic mutations that put children fighting AML at risk for recurrent disease after treatment.

“We have multiple publications showing that, by using ECS, we are extremely precise at finding mutations as rare as 1 in 10,000,” Dr. Druley says.

“Being able to predict who will fall prey

Todd Druley, MD, PhD 12

A publication of the Children’s Discovery Institute

to a recurrence of AML can inform the treatment we prescribe.”

The published findings of that study led to a collaboration with the Children’s Oncology Group, an international organization of pediatric cancer care providers. This gave Dr. Druley’s lab access to all samples from the largest pediatric AML study ever completed. In April 2017, the National Cancer Institute (NCI) approved this research, as well as the release of the nearly 2,000 patient samples from 870 children enrolled in the study. The sequencing of these samples will be performed in the School of Medicine’s McDonnell Genome Institute over the next 18 months to two years, and has now gained more than $500,000 of additional support from the Leukemia & Lymphoma Society through its five-year Scholar Award and $1.2 million from the NCI over five years, plus hopes for awards from other sources.

“We are looking for types of differences in children’s cancer that we have not identified before,” Dr. Druley says. “The hope is that, if we have a large enough study with enough computer horsepower, we might find some of these mutations. We are definitely the first to analyze the genes of leukemia cells in that fine of detail.”

The anticipated result of this work is a hundredfold more sensitive detection of residual AML that failed to respond

to initial treatment. This will naturally lead to gene-specific mutation data that can be used to inform a personalized approach tailored to an individual child’s cancer.

“I’m confident we will get there.

And, I can’t imagine it happening without the initial support from the CDI, Dr. Druley says.”

Detecting immune disorders Megan Cooper, MD, PhD, pediatrics and pathology and immunology, traces her emergence as a leader in the study of pediatric autoimmune diseases to a CDI award that actually had little to do with that topic.

“My CDI Faculty Scholar grant in 2010 helped me establish a lab to study natural killer cells, a type of immune system cell,” she says. “But it also gave me the freedom to explore other areas of interest, such as how genetics impacts the immune system.”

Dr. Cooper began collecting samples from patients who had unexplained autoimmune diseases to start looking for a genetic cause. More than 400 samples later, Dr. Cooper was performing whole exome sequencing on them when she discovered a previously unreported mutation in a gene called STAT3 that lived inside the immune cells of a little boy whose family had been looking for answers.

CONTINUED ON NEXT PAGE

AN UPDATE FOR INVESTORS IN THE CHILDREN’S DISCOVERY INSTITUTE

Fighting for Willow CONTINUED FROM PAGE 11

rite of passage known as the summer before college, Willow battled on, fighting serious infections brought on by adrenal insufficiency.

“Basically, my pituitary gland was pooped,” she says. “I’m so lucky to have had such a great team on my side.

I know I could not have gotten through the last six years without them.”

Today, Willow is getting through college while managing her disease and rooting for the researchers in her corner. “These brilliant researchers are just amazing. I’m excited that there are people working on a disease that causes pain and disruption.”

Save the date

CDI Investor Symposium: November 1, 2018 Don’t miss this evening of engagement and inspiration.

The 2018 CDI Investor Symposium will bring together researchers of pediatric disease asking bold questions through innovative experiments with the generous donors who are investing in that important work. Mark your calendar and make yourself part of the conversation of transforming pediatric health care.

The faces of precision medicine CONTINUED FROM PREVIOUS PAGE

“We knew that other mutations in STAT3 caused immune deficiencies, resulting in frequent infections, but the mutation we were looking at appeared to actually put the immune system into overdrive. Knowing its existence led to a CDI grant to explore drug targets that would shut down STAT3’s ability to lead to disease. We were able to lessen that patient’s suffering and the progression of his disease with therapy already on the market to treat juvenile diabetes. This is the realization of

personalized medicine: being able to find the patient’s exact problem and treating that exact problem.”

Dr. Cooper’s lab has been off and running ever since, gaining one funding opportunity after another to help her advance the study of primary immunodeficiency. Her latest is an award from the Jeffrey Modell Foundation to establish the Midwest’s premier destination for kids living with immune system disorders. The foundation is a global nonprofit organization dedicated to primary immunodeficiency (PI) research, physician education, patient support, public awareness, advocacy and newborn screening.

The Jeffrey Modell Diagnostic and Research Center at Washington University School of Medicine promises to speed discoveries and deliver individualized treatment approaches to patients fighting primary immunodeficiency disorders.

One fan of the new center will be Chase, a young man whose life changed when he, at age 9, woke up unable to stretch out his left arm. This was the first of a cascade of symptoms that have led to Chase being wheelchair bound and needing dialysis. After performing whole exome sequencing on his genes, Dr. Cooper found a mutation in SGPL1, a protein shown to cause immune system dysfunction.

“Being able to finally give Chase a diagnosis was so gratifying because it offers him hope,” Dr. Cooper says. “He knows that my lab is looking for a drug that thwarts his genetics from harming his health.”

Megan Cooper, MD, PhD

Guardians of Research

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letting kids be kids

Adaptive toy lending library puts therapeutic play in the hands of every kid

A wound in his chest caused this little boy to have challenges with his fine motor skills but did not dampen his enthusiasm for playing with a switch-adapted fire truck or for getting creative with Squigz suction cup toys.

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Guardians Magazine Spring 2018

St. Louis Children’s Hospital believes that no child should be held back from conducting the work of childhood, which is to play. And the Tri Sigma Foundation could not agree more. That’s why it provided funding for an innovative adaptive toy lending library at Children’s.

This kid loves music and really enjoyed the musical cube toy that allowed him to easily press a button and hear music from different instruments. (above) This young man is going through cancer treatment and uses adaptive toys to keep up the strength in his leg muscles and pass a little time while he’s at it. (below)

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he library matches appropriate adaptive toys for children requiring special accommodation in order to be fully successful at play.

Consulting with Child Life specialists, clinicians throughout the hospital can borrow sanitized toys to put in the hands of a diverse group of patients. Kids with autism, Down syndrome, ADHD, cerebral palsy, visual and hearing impairments, and other conditions can be offered toys tailored to address their therapeutic needs.

The library offers Child Life the opportunity to capture data that reveal outcome improvements occurring as a result of adaptive toy play therapy and add to the knowledge base on the effectiveness of such toys in a hospital setting.

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featured guardians of childhood: nurse navigator

Helping families find their way

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Guardians Magazine Spring 2018

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ecause St. Louis Children’s Hospital ranks among the best in all 10 medical specialties measured by U.S.News & World Report, it attracts families looking for seamless care for medically complex conditions. Many of these families now benefit from a successfully piloted nurse navigation program.

“No family should manage a child’s life-threatening disease or chronic medical condition alone. The health care system can be difficult to digest and decipher,” says Alissa Haycraft, MSN, RN, CPNP, clinical lead for the Family Resource Center (FRC) at St. Louis Children’s Hospital. The donor-funded FRC, which offers a place for parents to learn all about their child’s specific illness or developmental stage, now partners with the St. Louis Children’s Hospital Specialty Care Center (CSCC) and Washington University School of Medicine to administer the innovative nurse navigation program.

But, Alissa adds, the program would not be what it is without the skill and dedication of its first nurse navigator, Jennifer Rellergert, BSN, RN. “In my mind, Jennifer has the perfect background and expertise needed for this role,” Alissa says. “Along with experience working in the NICU and on quality improvement teams, Jenn has a passion for family-centered care, education and patient advocacy.”

Families are referred to Jennifer by community pediatrician practices selected by the navigator program team.

This includes the four pediatric practices located inside the CSCC: Mason Road Pediatrics, University Pediatric Associates, Purely Pediatrics and Kids Docs, LLC. Families quickly learn that a call to Jennifer will save them precious resources, including time and money, and help them avoid extra stress and worry. She can look at a patient’s need for multiple medical tests and specialty clinic visits and — taking into account such factors as travel time needed and the schedule of each service required — develop a plan tailored to each family.

She then communicates this back to the pediatrician, keeping everyone informed.

“As a nurse, I’m all about avoiding infection, especially when it comes to children whose condition or circumstances make them vulnerable,” Jennifer says. “So, if they can tolerate several clinic visits in one day and I can make it happen, that’s preferable to

The boy is now a patient of several other Children’s services, including cardiology; endocrinology; ophthalmology; orthopedics; social work; and physical, occupational and speech therapy. Jennifer assists the mom in the coordination and wayfinding for appointments at both the hospital and the CSCC.

Jenn has a passion for family-centered care, education and patient advocacy.

Alissa Haycraft, MSN, RN, CPNP, clinical lead for the Family Resource Center them coming in two different times, especially if St. Louis is not their home.”

She not only handles the needs of families requiring appointments with multiple specialists, but urgent needs as well. “I collaborate with doctors and schedulers in order to accommodate a family’s needs. We work together for the best interest of the child,” says Jennifer.

Word about Jennifer’s expertise and services has spread. Recently, a newborn discharged from another hospital needed to have a follow-up visit in the neurosurgery clinic. When his mother brought him to the CSCC for that visit, it became clear that the little one needed more attention than just one service could provide. One call from the nurse practitioner in the CSCC’s neurology clinic to Jenn and the navigation challenge was on.

No matter how busy she gets or how much others demand of her expertise, Jennifer isn’t above acting simply as a concierge, helping out-oftown families find lodging or enjoy an attraction to round out their trip. “I’m starting to know which attractions are wheelchair accessible and other features that will make for a successful visit,” she says.

Jennifer’s efforts to ensure the highest level of family-centered care have not gone unnoticed. She recently won St. Louis Magazine ’s 2018 Excellence in Nursing Award for pediatrics.

“Jenn is the picture of nursing excellence,” Alissa says. “She’s a fantastic addition to the Family Resource Center and a true Guardian of Childhood.”

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buzzworthy

Help prevent child abuse with a license plate from the Children’s Trust Fund of Missouri

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t. Louis Children’s Hospital is proud to partner with the Children’s Trust Fund of Missouri in support of our Family Resource Center. Thanks to the many Missourians who proudly display the Prevent Child Abuse state license plate on their vehicle, our hospital offers a medical resource librarian who provides caregivers with helpful information — particularly focused on parenting children with chronic medical or behavioral health conditions — so they are emotionally prepared to deal with the stressors that may accompany their child’s diagnosis.

Through this generosity, countless families using the hospital’s Family Resource Center grow their parenting knowledge and resiliency, reducing the probability of child abuse and neglect.

Sign up today for your own specialty plate. Make a donation today at ctf4kids.org/how-you-can-help/ license-plates and select “St. Louis City: St. Louis Children’s Hospital (JC36)” at checkout!

To learn more about these wonderful programs, please contact Katie Nelson at 314.273.3460 or kathleen.nelson2@bjc.org.

Family Resource Center

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Guardians Magazine Spring 2018

buzzworthy

3-D printing comes to Children’s

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hanks to the generosity of an anonymous St. Louis Children’s Hospital donor, the Washington University School of Medicine pediatric specialists now have access to a state-of-the-art 3-D printer. The grant, used to establish a multispecialty lab to print pre-surgical, anatomically precise models, guarantees that St. Louis Children’s Hospital stays at the forefront of innovative medical procedures, research and development.

Surgeons armed with 3-D printing tools and resources can deliver more informed care and achieve shorter surgical times.

The results are better outcomes for medically complex and invasive procedures — getting children back to childhood faster.

These improvements result in fewer visits to the operating room, reduced costs and a growth in patient referrals to St. Louis Children’s Hospital, where our physicians are working to improve the health of all children; every patient, every family, every day.

3-D ribcage

Surgeons armed with 3-D printing tools and resources can deliver more informed care and achieve shorter surgical times.

3-D heart

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Be a part of the big picture!

Honor someone special, mark a milestone, give thanks for the care you’ve received and be a part of something new by sponsoring a Guardians Fund Art Tile.

When you make a gift of $250 to the Guardians Fund, you can have a name or short message (26 character max) of your choosing located on a tile that will be incorporated into a unique mosaic mural that will be displayed in the hospital upon completion. The mural is anticipated to be unveiled and on display in early 2019. Each tile will also contain artwork drawn by a student, an employee or a child who has received treatment at St. Louis Children’s Hospital. We will be taking orders for dedicated tiles until the end 2018 for inclusion in this mosaic mural.

We hope you will join our ever-expanding family of supporters with your Guardians Fund gift today, and help us picture a better tomorrow for all kids.

To learn more about the Guardians Fund mosaic mural project, visit projectsnap.org/stlchildrens.