Meet Stella!
Stella’s mother, Sam, explains that their family’s experience at The Barbara Bush Children’s Hospital (BBCH) began before Stella was born. After receiving the news that Sam and her husband were both carriers of the cystic fibrosis (CF) mutations, doctors felt that CF was likely the reason that Stella was experiencing a bowel blockage in the womb at 38 weeks. Their family switched doctors and hospitals, and met with the care team at BBCH, including pediatric Gastroenterology surgeons and Neonatologists, to discuss a plan for Stella and possible outcomes at her birth. Once she was born, Stella would need advanced care at the BBCH Neonatal Intensive Care Unit (NICU), and there was a potential that Stella would also need surgery (children with CF who have this blockage, also known as meconium ileus, are very likely to need surgery to remove the obstruction).
Stella was delivered at 41 weeks, and whisked off to the NICU for testing. Hoping to clear her intestines without surgery, Stella received IV’s, contrast dye enemas, and NG tube medications over the first 10 days in the NICU. Sam shares that even though she and her husband were anxious for Stella, “The care she received in the NICU was absolutely incredible and unforgettable. My husband and I are eternally grateful to the nurses and entire care team who were patient, understanding and helpful during some of the most stressful nights that week.”
The BBCH pediatric pulmonary team confirmed Stella’s CF diagnosis in the NICU, and met with their family. Despite the diagnosis, Sam explains that the team gave them confidence, and “the most hopeful pep talk about the future of CF.” She adds “Stella ended up being discharged from the NICU at 10 days, eating by mouth and having fully cleared her blockage without surgery- something that does not happen often with kids that have this diagnosis. I remember leaving the hospital with an attitude like, ‘WE CAN DO THIS,’ even though we were leaving with a daily treatment and medication regimen on TOP of having a newborn!”
In additional to a daily treatment and medication schedule at home, Stella has regular appointments with the multidisciplinary providers at the BBCH CF Clinic, and Sam appreciates the team approach: “During the last 6 years, we’ve met with the CF clinic many times and have always felt like we were part of a team working together. My husband and I feel heard when we have questions or concerns about Stella’s treatment. We are always greeted with smiles and enthusiasm, which Stella LOVES! These appointments can be long and tough for a little one, especially if blood needs to be taken, but they do a great job of creating a comfortable and positive environment, and are always actively looking for ways to improve the experience for kids.”
“The CF care team has been hopeful and excited for the future of CF since the day Stella was born and that has been an integral aspect to why our experience has been so good. We enjoy hearing about their passion for the care they provide, and are grateful they are part of our journey.”
Today, Stella is 6-years-old, and loves school, especially gym class. She tells us that when she grows up, she wants to be a rock star, but as far as we’re concerned- she already is.