Life-Saving Care: SSM Health Cardinal Glennon Children’s Hospital
When you have a new baby with serious medical needs, the emotional burden can take a signif-cant toll on your family. Instead of enjoying those first weeks at home with your new daughter or son, you’re flooded with care decisions, questions and concerns that can seem insurmountable.
Farmington resident Rachael Thomas and her family found themselves in that position when daughter Stella was born prematurely and developed puzzling health problems. They found solace and hope at SSM Health Cardinal Glennon Children’s Hospital, which relies on the Glennon Card shopping program to fund critical services for thousands of young patients each year. “My daughter arrived at 28 weeks and was airlifted to Cardinal Glennon from Illinois, where we were living at the time,” Thomas says. “She was in the NICU (neonatal intensive care unit) for six months because of serious breathing and digestive issues.”
The baby struggled with abdominal bloating, jaundice, weight loss and vomiting, among other problems. At one point, doctors suspected Hirschsprung disease, which causes intestinal blockage; later, they considered cystic fibrosis, but it was difficult to be sure. “If they tested for a condition that needed five matching symptoms for a definitive diagnosis, Stella would have four,” her mother explains. “She had a lot of upper and lower GI endoscopies, biopsies and other tests, but nothing came back conclusive.”
There were many other frustrating hurdles to overcome, like serious problems establishing a PICC line, a catheter that is inserted in a vein to deliver nutrition, fluids and medication. “Staff members would get her line started, even using ultrasound to find the right blood vessel, but the vein still would blow,” Thomas notes. “They ended up having to put in a Broviac catheter, a long-term central line like those used to deliver treatment to cancer patients.” Stella also had to have a gastrointestinal tube for continuous feeding, and she faced a constant threat of complications like pneumonia.
Thomas says that as frustrating as the situation became, the staff at Cardinal Glennon pulled out all the stops to help her daughter. She says they searched tirelessly for answers and shouldered every setback along with the family. Although doctors were unable to put an exact name on Stella’s condition, they never wavered in their commitment to help her.
Now four years old, the little girl is doing better and the family is able to manage her needs. “She doesn’t have a GI tube anymore and can eat on her own, but we still have to watch her carefully,” Thomas says. “She doesn’t gain weight easily, but her immune system seems to be in the clear, and she doesn’t have as many respiratory issues now. We’ve had to keep her pretty isolated because of the COVID-19 pandemic, and we also have to pay careful attention to her diet. She has done well with all of it and can be more active now.”
Thomas says she hesitates to consider how Stella might have fared without the assistance of Cardinal Glennon doctors, nurses and therapists. “They were amazing,” she notes. “They did a ton of research to figure out how to best help her at each step. The doctors were caring and honest with us, and the nurses literally were our sanity; we wouldn’t have made it through without their support. I can’t imagine any hospital having a better care team. We consider them our Glennon family; there are no words to describe the depths of our gratitude.” Thomas adds that after witnessing Stella’s many trials and triumphs, her older daughter now talks about wanting to become a NICU nurse. “Cardinal Glennon care is already a legacy in our family,” she notes.
Though Stella isn’t a baby anymore, the family still can access her Cardinal Glennon neonatologist, dietitian and other staff members whenever advice is needed. Thomas says they have been patient and compassionate, explaining every detail of her daughter’s care along the way. “They really helped me become an advocate for her,” she notes.
Cardinal Glennon is always developing new ways to serve children like Stella, and the Glennon Card program is an important part of that effort. Each year, fundraising proceeds support different initiatives at the hospital, including new diagnostic and surgical advancements. This year, one of the priorities is a state-of-the-art, hospital-wide Milk Lab, which will provide customized nutrition for babies and save nurses critical time and effort. Since 2011, the Glennon Card initiative has raised more than $1.73 million to benefit young patients.
Thomas says she is proud to be part of the Cardinal Glennon family and feels compelled to pay it forward for the benefit of others. “The hospital and staff offered us tremendous, life-sustaining care when we needed it most,” she says. “My family loves being a voice for Cardinal Glennon and its fundraising efforts. We are excited to give back to the amazing team of professionals who worked to save our daughter.”
The Glennon Card discount shopping program runs from Oct. 16 to 25. Since 2011, it has raised more than $1.73 million for SSM Health Cardinal Glennon Children’s Hospital. Shoppers can purchase a paper or digital card to receive discounts at more than 250 participating retailers, restaurants and service providers. Pictured on the cover: Rachael Thomas with daughter Stella inside the Kendra Scott store in the Central West End. For more information, visit glennoncard.org.
Cover design by Julie Streiler
Cover photo by Colin Miller of Strauss Peyton Photography
Pictured at top: Stella in the Cardinal Glennon NICU and enjoying life at home
Photos courtesy of SSM Health Cardinal Glennon Children’s Hosptial