“Dr. Thornton was amazing, and got Nyla stable almost immediately. We can't thank Dr. Thornton and his team enough for their continued support in this journey.” – Nyla’s mom
Nyla was born at a small hospital in Texas. Her blood sugar level was 16 at birth. They said it was common with moms with gestational diabetes and it would stabilize in 2 days. She would not nurse or take a bottle. They ended up putting an IV in her umbilical area to deliver 24/7 dextrose to keep her sugar levels safe.
Two weeks later there was no improvement, and we were told they had no idea what was wrong and transferred us to Dallas Children's. We lived there in their NICU for 2 full months. They did genetic testing and we were told nothing was found. They finally stabilized her with an NG tube and diazoxide, and started weaning the IV dextrose down until we finally were able to take her off it completely. The doctors tried their hardest but we were sent home with the answer, "We don't know what's causing this, but it will go away on its own within a few months." It didn't.
Nyla was hospitalized several times within the first 4 months. She had extreme side effects to the medication including cardiac and respiratory issues. They had to add more medication to counteract the side effects, and lower the dose of diazoxide causing her sugar to become unstable again. She was fed every 2 hours. She suffered developmental delays from spending so much time in the hospital and frequent low blood sugar levels.
We heard about Cook Children's through online searches. The last time Nyla was hospitalized, we requested to be transferred to Cook Children’s. After a week of fighting to get her transferred, it finally happened. It turns out she does have a genetic form of HI that the previous hospital did not understand. Dr. Thornton was amazing, and got Nyla stable almost immediately. He set up to have her readmitted for the 18FDOPA PET scan, pancreas biopsy, and a GTube placement. We were sent home with a better understanding of her disease, a true plan, and a support system. Since then, her feeding has improved, and with help from the team at Cook Children's, we were able to get her into the therapy programs she needs. She is now 15 months old, and thankful she has not been hospitalized for sugar issues in 6 months. We can't thank Dr. Thornton and his team enough for their continued support in this journey.
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