Doctors Miss Hyperinsulinism Diagnosis At Birth After Assuming Low Blood Sugar Was Caused By Gestational Diabetes – Kaylee’s Story

July 26, 2012

Kaylee was born in 2006 and immediately showed signs of her rare disorder, Hyperinsulinism. Hyperinsulinism although quite complex, is simply described as chronic dangerously low blood sugar. Low blood sugar can result in seizures which in turn destroys organs, causes brain damage and/or even death.

At Kaylee’s birth, my doctors assumed, because of my being over-weight, of acquiring undiagnosed Gestational Diabetes, causing her low blood sugars. Their presumptions were inaccurate considering all three of my Gestational Diabetes tests returned negative.

Without ever checking Kaylee’s blood sugars prior to discharge, they sent us home. Five months and several seizures later, our pediatrician finally took the time to listen to our concerns and agreed to test her blood sugar. Kaylee’s blood sugars were indeed quite low.

We were sent to CHLA (Children’s Hospital of Los Angeles) where she was diagnosed with Hyperinsulinism and has been on medication ever since. After thorough genetic testing, my youngest and I were also diagnosed with the same disorder. Fortunately, we do not require medication to treat it.

We now strive to bring awareness to this disorder, with the belief there is no reason any child should be undiagnosed for long amounts of time – especially when the symptoms of this disorder are clear from the beginning.

Kaylee should have been tested and diagnosed immediately upon onset of her symptoms. We were fortunate that she made it through her lows without any damage, but we know many kids who have not had the same positive results from a lack of immediate diagnosis.

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