Congenital Hyperinsulinism Center Patient Stories

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.

Bryce was diagnosed with hyperinsulinism at 3 weeks old. Bryce’s treatment is a bit more complicated because he has a rare form of HI called HNF4A HI, named for the defective gene responsible.

Eimy was diagnosed with a newly recognized type of HI, a transient form called HNF1A-hyperinsulinism. Treatment for HNF HI can be tricky as the “just right” dose of diazoxide continues to fluctuate as children grow.

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.

Isabella was diagnosed with glucokinase HI when she was 5 days old after she spiked a fever, unrelated to her HI, and was transferred to The Children's Hospital of Philadelphia for treatment.

When Danny's hypoglycemia (low blood sugar) failed to respond to dextrose, his mother, Carla Velez, was referred to the Congenital Hyperinsulinism Center at The Children's Hospital of Philadelphia.