Video: Paige's Hyperinsulinism Story

Video: Paige's Hyperinsulinism Story

Kevin Brown, Paige's Dad: Paige's birth was really normal, nothing that would indicate that there was anything wrong. Looking back, the only thing that might give us a clue was I just remember Maleka saying: "She's always trying to feed."

Maleka Brown, Paige's Mom: Initially, I was with her one day in the house and I noticed that she had a seizure. So, I called the doctor and the doctor said if she has another one, you know, definitely take her to the ER. So, we were in the store, she had another seizure and I took her straight to the ER, and she was about 4 months old.

Kevin: The hospital where my wife and my mom took her, they immediately knew something was wrong. The normal blood sugar is from 70 to around 120, and it was 30. And it took probably another three weeks before we were told that it was most likely hyperinsulinism. There's some defect in the pancreas that for some reason, it doesn't regulate the production of insulin.

Once they gave us this diagnosis, they sent us home with medication. She had four-hour feeds, so that meant one of us was waking up every night, terrified, worried if we overslept.

Maleka: And then we noticed that her sugar levels were getting lower.

Kevin: You know, while all that was going on, I was looking on the internet that the best thing to do was to bring her to CHOP to be seen by people who have experience with it.

Maleka: We're very grateful that we were close enough, you know, to get here. As some families live really far away.

Kevin: We went through everything, the outcomes, what could be done, what the future could look like. It sort of gave us some relief, and it gave us a better understanding of what was going on.

Maleka: I remember the first night we got here, there was another boy who had come, that was a little closer, that had the same symptoms. So I was like, "Oh my gosh, there's someone here that has the same condition that Paige has," and it was very … it was just a sigh of relief that there would be someone here to actually maybe help, you know, figure out how we can deal with her condition.

Kevin Brown: Before we even were admitted here, they were helping with phone calls to the insurance company. It was all the sort of behind-the-scenes stuff that had to get taken care of, that CHOP really helped us deal with.

Maleka: The nurses here were amazing. I had a really good relationship with a lot of the nurses. They would explain everything; they were very comforting. Just being here with her daily just helped me stay focused and try to find, you know, the best outcome for her.

Kevin: I think we were truly blessed to have Dr. Adzick as her surgeon. As the surgery was described to us, Dr. Adzick said he went in, he felt around and saw some areas of the pancreas on a tail that looked abnormal. And so, they took approximately … was it 12 to 15 percent, something like that, of her pancreas was removed. She had surgery when she was 7 months old. By the time she was 5, I consider her cured. We had an incredible, incredible outcome.

Maleka: Children's Hospital of Philadelphia has truly affected our lives and that they saved our daughter. They embraced us and totally took care of her and us and gave our daughter a chance at life. Paige is a girly girl, but she's also a fighter, kind of like how she was, you know, here at CHOP. She definitely has her girly moments, but she will put up a fight when she needs to.

Kevin: She's a poet, she's the energy of our house. She has two older brothers, but she still thinks she's in charge.

Maleka: She's just an amazing little girl that has overcome great obstacles and we have CHOP to thank for that.