No one knows how many babies die every year from Congenital Hyperinsulinism. Babies are released from Hospitals regularly with Low blood sugars. Some make it, others don’t. When I tell people Zoe’s birth and diagnosis story, I usually get a weird look when I say “Thank Gd she was already in the NICU due to her birth via abruption.” I say thank Gd because the other option would have been being raced to the ER with a completely unresponsive new born or losing her forever.
I could never imagine a world without her in it. From her sassy attitude to her evil villain laugh, she lights up my day. Every day she is poked with approximately 8-10 needles to test her blood sugar. Sometimes more if her pancreas is being stubborn. Or as we like to say “having a party.” No 2 days are the same. We never fight the Highs. She has never been over 130 in her life. We are always fighting a Low. Have you ever had Low blood sugar? Do you remember how you felt?
Zoe, thankfully, sort of responds to the medication typically used for CHI, Diazoxide. This medicine is a gold standard for medicine. Only 1 company in the world makes it and there is no generic. In fact, within the United States it can only be sold in liquid form. While saving her life, this medicine also causes excessive hair growth. Zoe is known for her luscious locks, but she also has no hair line until it reaches her eyebrows and excess hair on her arms, legs, & tush. Thankfully she has not noticed the comments or snickers from adults & children. The need for more research is HUGE! Not all children respond to diazoxide.
There are 2 other medications used via injections. (As if our little ones are not poked with enough needles a day!). But they may become less effective over time and the side effects can be alteration of gut motility, gallstones, hypothyroidism, & short stature. Children may also have their pancreas 95-99% removed. Even this is not a cure! These children may continue to require frequent feedings and medication. The most severe long term complication is brain damage. Learning disabilities & neurological problems such as poor coordination, cognitive delays, or cerebral palsy all depend on the frequency, severity & duration of hypoglycaemia episodes.
Research is the key to these children’s success! Please help kids like Zoe like healthy and thriving lives!