Congenital HI Patient Stories

The rare is commonplace at CHOP, and for children with extremely low blood sugar from hyperinsulinism, that expertise changes lives, as Ben’s family learned.

Congenital hyperinsulinism is rare — 1 in 50,000 births — and Paige had a rare type of HI. But CHOP’s expertise allowed her to be cured.

The combination of a barking dog, an alert local endocrinologist, and the experts at CHOP’s Congenital Hyperinsulinism Center gave Adriana the best result possible: a cure.

Alaya's family traveled from North Carolina seeking the expertise of CHOP’s Congenital Hyperinsulinism Center. She became the 500th baby to have a pancreatectomy at CHOP.

Siblings Lily and Landon were both treated for congenital hyperinsulinism at Children's Hospital of Philadelphia. 

When her daughter's HI/HA was well managed, this mom turned her attention to advocating for her child's needs at school.

Óðinn Orri Sævarsson was born with a potentially life-threatening disease rarely seen in Iceland, congenital hyperinsulinism (HI). Quick action and a team effort between Icelandic specialists and CHOP's International Patient Services got Óðinn to CHOP for treatment, where he was cured.

I told them CHOP was the best place for Dante to go … When I need their expertise, they’re there.

Zoë Dueñas’ atypical congenital HI led her parents to CHOP where surgery to remove 15 percent of her pancreas helped stabilize her condition. Since then, Zoë has continued to have normal blood sugar without medication or dextrose.

Cooper traveled from Rhode Island to CHOP for treatment of Beckwith-Wiedemann syndrome and hyperinsulinism. Now 2 1/2 years old, he is happy, active and intellectually on target.