Alivia’s journey with CDH

Alivia Gannon recently got the kind of information every kid wants to hear: She won’t have to return to the Congenital Diaphragmatic Hernia Program at Boston Children’s Hospital for another five years. For Alivia and her parents, Erin and Richard, the news is particularly welcome: Although the active 12-year-old is now the picture of health, some specialists initially believed she likely wouldn’t survive past birth.

When Erin was just 22 weeks pregnant, she learned that her daughter had a congenital diaphragmatic hernia (CDH). In this rare and life-threatening condition, a hole is present in the diaphragm, the muscle that the body uses to breathe. This can cause the intestines and other abdominal organs to move into the chest, which prevents normal lung development. Rather than choosing to terminate the pregnancy, the Gannons sought a second opinion from Boston Children’s Advanced Fetal Care Center (AFCC).

Overwhelming details

There, the couple received more overwhelming details. The CDH was causing Alivia’s stomach, liver, and bowels to crowd in her chest, leaving her lungs with only enough room to grow to 12 percent of their normal size. Still, they felt comfortable with the next steps: Because the pregnancy was high risk, Alivia could be delivered right at Boston Children’s by Erin’s own obstetrician. “We had been told that transporting Alivia from one hospital to another would be the most dangerous part,” says Erin. “Being able to deliver right at Boston Children’s was great because it removed a lot of that initial risk.”

Indeed, Alivia was immediately whisked into surgery with Dr. Russell Jennings, who performed the repair. While the procedure was a success, Alivia still faced challenges. When she had been on a type of advanced heart and lung support called extracorporeal membrane oxygenation (ECMO), she experienced blood clots that traveled to her brain and subclavian artery, the latter of which was treated by cardiologist Dr. Mary Mullen. Her parents couldn’t even hold her until she was 22 days old.

Throughout it all, the Gannons found comfort in registered nurse Donna Morash in the AFCC. “She was there for me whenever I had any questions, day or night, and explained things in ways that made sense,” says Erin. “She knew we had a long road ahead but encouraged us to stay positive.”

Happy and active

That determination paid off. Three months later, Alivia was finally able to come home — with supplemental oxygen and nine prescription medications. Her nurses helped ease the transition by providing the Gannons with a comprehensive binder of information about her care and making sure both parents were certified in CPR.

Slowly but surely, Alivia made improvements. Within six months, she was off oxygen. Over time, she overcame the oral aversion she had developed while on the ventilator and began to eat and grow properly. As she’s gotten older, her follow-up appointments have waned, so that she only needs to return to see Dr. Mullen once a year. And now, she won’t need to return to see Dr. Terry Buchmiller and her colleagues in the CDH Program for several years.

Today, Alivia can be found riding her bike, rollerblading, practicing karate, and cartwheeling across the gymnastics floor. She’s doing well in school and loves hanging out with her brother and sister. “She wants to be right in there, doing whatever everyone else is doing,” says Erin. “We’re just thrilled with her progress.”

Learn about the Advanced Fetal Care Center and the Congenital Diaphragmatic Hernia Program.