Video: Kristin's Hyperinsulinism Story

Back in the 1960s, Brad and his brother were treated for congenital hyperinsulinism (HI) at CHOP’s former location on Bainbridge Street. The brothers even participated in a drug trial that helped identify the front-line medication to treat the disease. Then, 27 years later, Brad’s daughter, Kristen, was diagnosed with the same condition, and — of course — the family brought her to CHOP.


Video: Kristin's Hyperinsulinism Story

Brad Parkes, Kristen's Dad: My HI experience started back in 1964; I was 2 or 3 years old. I had seizures from my low blood sugar, my brother also. Sugar is essential to brain function, without sugar the brain can be damaged. The family doctor in the neighborhood didn't know what it was, but he said, "You have to go to Children's Hospital."

And it turned out that one of the world's leading researchers in hyperinsulinism was Dr. Lester Baker, here at Children's Hospital. Back in 1965, the FDA approved for clinical trials a drug called Diazoxide, and my brother Greg and I were study subjects for that clinical trial. We continued over the years to come down for clinical studies, not so much treatment, until Kristen was born. And then, it started all over.

Kristen: To give you a brief understanding, a normal blood glucose range is, for adults, is between 80 and 100 to 120. That's the range you wanna be in. I, on day two of life, I was 8. My blood sugar glucose was 8; I was unresponsive. They had to call a CODE. They were able to get glucose in me. I don't know exactly what method, but I was able to be revived.

My body secretes too much insulin, so insulin counteracts sugar. So, if I'm having too much insulin, that is lowering my sugar, kind of the opposite if you know what diabetes is. This doesn't need to be a life-ending diagnosis. It will be life altering. I was able to get on Diazoxide relatively quickly and live a normal childhood. But my uncle was not so lucky. He just, one time, was having a low blood sugar episode and was rushed to the hospital.

Brad: They failed to get glucose into his blood system, and … there was resulting brain damage. He functions fairly well, but still … and that is … what we have been very fortunate to avoid, and we have never gone to another hospital besides CHOP.

Kristen: The way that CHOP is able to provide a sense of comfort and a sense of normalcy is so critical, I feel. Dr. Stanley, what can I possibly say about Dr. Stanley. He is like an uncle to me, I feel. He and Dr. De León are saying, "This is what's going on. This is what we're gonna do now. What do you think of that?  How do you feel about it?  Do you think that this is possible? If not, what can we do differently?” We work together. I was never led to believe that I couldn't do all of the things that I wanted to do or have the things in life that I wanted to have. I have not had to rush to the hospital ever, since I was a baby.

Brad: I have such fond memories because of the treatment we were given and the people, the very special people that took care of us.

Kristen: I live a completely normal life. I work as a pediatric nurse. I'm getting my masters right now. There are many days where hyperinsulinism doesn't affect my life at all, and there's some days where it affects it a lot. To those diagnosed,  I want you to know that it can be managed and you can live a completely normal life.

Topics Covered: Congenital Hyperinsulinism

Related Centers and Programs: Congenital Hyperinsulinism Center