“Dr. Thornton and the Hyperinsulinism team were an amazing support system and continue to be today.” - Caroline’s mom
Caroline was born at 37 weeks by emergency c-section, and weighed 11 lbs 3 ounces. She was not breathing and was rushed to the NICU. Her blood sugar at birth was 17. The neonatologist was not sure what was going on. They told me if they did not have answers in a week, when all of her test results came in, they would send her to another hospital in Dallas. When they contacted the endocrinologist at that hospital, she told them that if it were her child, she would take her to Cook Children's Medical Center to Dr. Paul Thornton.
So, at 7 days old, Caroline was transported to Cook Children's. Dr. Thornton was pretty sure it was Hyperinsulinism as soon as he met with us. She was one of the first children to be 100% treated at Cook Children's.
It was determined that she had diffuse Hyperinsulinism and at 3 weeks old, she underwent a 98% pancreatectomy. She became tube dependent and a G-button was put in. The entire situation was incredibly overwhelming as a single mother. However, Dr. Thornton and the Hyperinsulinism team were an amazing support system and continue to be today.
Eventually, she began to eat by mouth. The G-button was left in until she was 8 years old for overnight feedings to keep her blood sugar up. In the summer of 2017, her body quit producing enough insulin to keep her blood sugar within normal range. She is now on a short acting insulin as well as a long acting insulin. She lives a normal life and we manage her blood sugar each day. It is not easy, but with the amazing doctors and nurses at Cook Children's, we have learned to manage it so that it does not manage us.
I have always taught Caroline to be as independent as possible in managing her blood sugar so that she is able to play sports, have sleepovers with friends and participate in any other activities healthy children do. She has also had her tonsils removed, a lymph node removed and G-button closure surgery at Cook Children's. We have honestly had nothing but positive experiences there. I cannot imagine where we would be today without the early diagnosis and treatment of this rare disease. Please help support this hyperinsulinism program that has been there every step of the way for us.
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