Congenital Hyperinsulinism International
               

HIstories: Idris’ Story

stories of children dealing with hyperinsulinismMy son Idris was born on 2/4/19 weighing only 4 lbs. The first few days of his life, his glucose level never got higher than 30 despite being on a continuous IV for three days that was supposed to increase his glucose. After listening to my intuition and refusing to let them discharge us, my son was flown to Children’s Hospital in Birmingham AL. He received THE BEST care from his endocrinologist. After a few weeks at Children’s, his doctor allowed me to take him home with very strict feeding schedules, more medicine than I could remember, glucagon shots, glucose meters etc. I remember vividly being told if my 4-week-old baby becomes unresponsive, this is what I should do. It was the most terrifying moment in my life. I began to obsess over making sure his glucose levels didn’t drop. Idris’ endocrinologist suspected he had congenital hyperinsulinism. She told me this from day one that he was in her care. Gene testing soon confirmed this.

I began to affectionately call Idris my Sugar Baby – because all I could think of doing was making sure his sugar levels stayed higher than 70. When it came time to plan his first birthday, I thought to myself, “What better way to celebrate my sugar baby than to give him a sugar party?!” The party had a Candy Crush, Candy Land, rainbow-type theme to it, and I let my imagination run wild. The one thing I really wanted was a candy bar that was sure to drive the other parents crazy.

The party definitely came out beautifully. My son is beautiful. His journey was beautiful. His HI is now managed by diet alone and I couldn’t be more happy and in love with him than I am now.