Lillian Hodgkin was born eight weeks premature, with DiGeorge syndrome, also known as 22q11.2 deletion syndrome, a genetic condition caused by a missing piece of chromosome 22. Patients like Lillian often have Type B interrupted aortic arch, a congenital heart condition in which a portion of the aortic arch is missing and would need to be reconnected.
But Lillian’s heart was even more unusual.
“In my career of 33 years, I have never seen a heart anatomy like hers,” said Frank Ing, interventional cardiologist, chief of pediatric cardiology and co-director of the UC Davis Pediatric Heart Center.
The UC Davis pediatric heart team spent many nights, even after hours, discussing how best to proceed to ensure that Lillian would have the very best chance at life.
Lillian, who was hospitalized in the UC Davis Neonatal Intensive Care Unit, needed open heart surgery to repair her heart. But because she was so small and sick, the risks were high. The team decided to wait until she was at least 5 kilograms, or 11 pounds, in size and at least past her original due date.
In the meantime, Ing placed flow restrictors (a device to control or limit her pulmonary blood flow) in the Cardiac Catheterization Lab. He had to position the flow restrictors so that they didn’t block the right PDA flow to the descending aorta.
The day after Lillian reached her original due date, pediatric cardiothoracic surgeon Timothy Pirolli repaired her interrupted aortic arch, a complicated surgery which restored her blood flow.
The solution turned out to be the innovative new Minima Stent System. It can be inserted with a tiny delivery system and further expand to accommodate her natural growth into adulthood.
The day after the procedure, Jake and Amanda were able to take Lillian back home to Placerville. The difference in Lillian has been like night and day, her parents said.
“Since the procedure, she has so much energy, and is more lively. She has been smiling nonstop,” Jake said.
The UC Davis team will continue to monitor her and will expand the stent as she grows. No additional heart surgeries are needed.
“This team at UC Davis has been so amazing. This was probably one of the scariest things that has ever happened to us, but the UC Davis team has done amazing things for Lillian,” Amanda said.
