Spirited little Stevie was born in June 2023, a happy and healthy baby, but a diagnosis of Crohn’s disease changed her life.
At just two months old, her parents, Breigh and Michael, noticed blood in her stool and rushed her to the emergency room. Doctors initially suspected a dairy allergy, leading Breigh to eliminate dairy from her own diet, as she was nursing Stevie at the time. The family tried many different specialized formulas, but Stevie’s symptoms persisted.
An Alarming Diagnosis
In January 2024, Stevie started daycare and was constantly sick with a runny nose, cough, fevers, ear infections, and even pink eye. She went to numerous medical appointments for various illnesses, but clinicians assumed it was due to exposure to so many new germs at daycare. At her nine-month check-up, Stevie’s pediatrician diagnosed her with “failure to thrive” after she hadn’t gained weight in three months. Her parents were shocked since Stevie had been eating well.
A month later, Stevie was suffering through severe vomiting and diarrhea, landing her back in the emergency room. Initially thought to have norovirus, she was admitted to UPMC Children’s for dehydration. After a few days, clinicians told the family that Stevie could go home once she was able to keep her bottles down and have solid bowel movements. It was at that time that Breigh explained that Stevie had never had a solid bowel movement in her life. This prompted the medical team to take a closer look into what was going on with sweet Stevie.
A Life-Changing Surgery at UPMC Children’s
The family met Leah Siebold, MD, a pediatric gastroenterologist at UPMC Children’s, who transferred Stevie to the Division of Pediatric Gastroenterology, Hepatology, and Nutrition for further evaluation. Dr. Siebold explained that gastrointestinal (GI) issues can be difficult to diagnose in infancy.
Eventually, a scope revealed that Stevie had strictures, acute spots of narrowing throughout her colon. Breigh says this is when she and Michael learned that Stevie has Crohn’s disease, a type of chronic inflammatory bowel disease that causes swelling and irritation of the digestive tract, potentially impacting growth and development for patients as young as Stevie.
This news was devastating, but the diagnosis also brought her parents some clarity after 10 months of medical appointments and constant concern for their only daughter. Clinicians shared that Stevie had one of the most severe cases of Crohn’s they had seen in a patient so young, and she needed an emergency colectomy, a surgery which would remove her entire colon. The surgery meant Stevie would need to live with an ostomy bag, a removable pouch attached to the skin around an opening in the abdomen, at least for the foreseeable future, but it was necessary to prevent further life-threatening complications.
Strength, Resilience, and Hope
Stevie’s colectomy surgery was a success, and after weeks in the hospital recovering from surgery, Stevie finally went home. Breigh and Michael say their daughter was like a whole new baby post-surgery. Her parents now bring her to follow-up appointments with Whitney Sunseri, MD, and the dedicated GI team at UPMC Children’s. “Dr. Sunseri has been amazing and so supportive, connecting us with social workers and numerous community resources,” Breigh shares.
Despite everything, Stevie never stopped smiling. Now nearly 2 years old, she is strong, independent, and full of life. “We know having Crohn’s in addition to having an ostomy bag could bring the challenge of feeling different, but we hope she can embrace who she is, no matter what. She’s already stronger than we could have ever imagined,” the couple shares.
Through it all, Breigh and Michael remain optimistic. Groundbreaking research and the generosity of donors continue to lead to new treatments for children and adults living with GI conditions like Crohn’s. “Donor support isn’t just funding important research, it’s giving kids like Stevie a chance at a future filled with health, joy, and freedom from pain,” Breigh says. “Thank you for being an integral part of journeys like Stevie’s, and for giving families like ours hope.”