GLENNON AMBASSADORS

Glennon Ambassadors are parents or patients who help us share our mission and grow the circle of support for the hospital. As an extension of their clinical relationship, many of our patient families find value and purpose in saying “yes” to opportunities that can support the hospital, our staff and patient families.

Grateful Patient Coordinator Laura Wulf says, “Parents are an incredible asset to us. They are our best storytellers because they live, eat and breathe our hospital culture every day. Their stories showcase our strengths and opportunities as an organization.”

Wulf, a former Cardinal Glennon oncology nurse and Glennon mom herself, considers it a privilege to give families extra “purpose” to their journey. “All of our parents and families have unique situations of time, talent and geography. Some spent a short, yet impactful amount of time here, and some have spent a lifetime here. It’s fun to explore their inspirations for staying connected and figure out opportunities with them from there. There’s always a way to connect the dots - story sharing, serving on a hospital committee, writing thank you notes, speaking opportunities, volunteering - any number of things,” says Wulf. “It is a gift that our families have willingness to share of themselves. It is the best way we can effectively show what exceptional care looks like and the impact of support.”

Meet some Glennon Ambassadors who are making a difference:

Lauren and Tim Simon

In 2018, Lauren Simon was pregnant with her second daughter, Emily. Big sister, Natalie, was 1 year old. Emily was diagnosed in utero at 24 weeks with hypoplastic left heart syndrome, meaning the left side of Emily’s heart did not form.

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

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

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

Since her last surgery, Emily has become a happy, silly toddler. She is now 3 years old and much like every other toddler. She loves to play with her sister, ride her tricycle and play on her swing set. She loves Peppa Pig and she especially loves talking. She is hitting all of her developmental milestones and is even advanced in some areas. Emily visits her cardiologist, Renuka Peterson, MD, twice a year at the Dallas Heart Center. 2021 is a big year for Emily. She had a cardiac catheterization in March 2021 and underwent her third - and final - planned open heart surgery in spring 2021. Emily will follow up with a cardiologist for the rest of her life, hopefully with just a yearly checkup.

Lauren and Tim have given their gratitude some legs and have done a number of things with the hospital to show their support. They shared their story (recorded and in person) as part of our annual Heart and Soul event in 2019. Tim has recently joined the hospital Ethics Committee, and both Lauren and Tim serve on the Patient Family Advisory Council for the hospital. “Our journey at Cardinal Glennon couldn’t be any better,” says Lauren. “We are so thankful for all of the amazing doctors, nurses and medical professionals for treating us like family while providing the best care to Emily. We are forever grateful to them.”

Amber Moss

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

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

unable to process certain parts of proteins and lipids (fats) properly, which leads to an abnormal buildup of organic acids and toxins in the body. Without appropriate nutrition and treatment, the accumulation of excessive levels of acids in the blood and body tissues affects nearly all organ systems in a dangerous way.

Since their initial NICU stay, Grant and Sebastian have had several visits to the Emergency Department and re-admissions to the hospital. They have their primary care doctor visits at SSM Health Cardinal Glennon’s Danis Pediatric Center. They are also followed by the hospital’s Complex Care Team, and Footprints℠, the hospital’s palliative care team. The boys’ care is a coordinated effort involving many specialties, which currently include genetics, neurology, nutrition, immunology, GI and ophthalmology.

“My biggest challenge is keeping them healthy and making sure that they are able to live their best lives. I try my best not to let them feel like they have limitations. What the future will look like is really unknown,” says Amber.

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

“The staff are truly so amazing – from the nurses and doctors to the housekeepers and greeters at the front desk. They are my support system – clinically and emotionally. The opportunity to be an Ambassador for Cardinal Glennon with Children’s Miracle Network is something I’m excited to do. My boys have a very rare condition. This gives me the chance to talk about it, show my appreciation to the hospital and also show the

Grant, Amber and Sebastian Moss

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

Jennifer Walkenhorst

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

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

Jennifer and Conner Walkenhorst

“When you clock out – we clock in. He’s our baby, too, and you need to feel confident about how much we love him.”

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

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

Jennifer willingly gives back to the hospital that has been there for her and encourages others to do the same. “Cardinal Glennon’s blessings are too many to state – from the technological advances to accessible care,” says Jennifer. “But the greatest blessings are the people, who have this gift of balancing their clinical know-how with their passion and compassion for people. You don’t find that everywhere, and that’s a very important thing to families,” she states.

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

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