Here you will find the CHI Be My Sugar Gallery where you will find the beautiful faces of our Sugar Babies and you will learn about their experiences and lives in the words of their parents. Babies born with HI, Sugar Babies , overproduce insulin, which causes low blood sugar. Prolonged low blood sugar can cause brain damage and death. Families with HI babies also need long-term on-going support as treatment is complicated, constant, and prolonged. Be My Sugar is a call to action to support the needs of people born with this rare condition because sugar is life for Sugar Babies.
The Be My Sugar campaign has been created to shine the spotlight on this rare condition to save lives and prevent brain damage. Prolonged hypoglycemia is the leading cause of preventable brain damage. This was my son Lewis. We discovered at birth that he had hyperinsulinism. He came home from the hospital after 3 week and was taking diazoxide and chlorothiazide. After a year he was weaned off the medications and had regular check-ups and was discharged from clinic just 2 weeks ago.
He is 7 now and shows no symptoms. This is my baby girl Dhara. She is now 2. She was born by C-section. When she was born, she was very big and swollen, but nobody seemed to notice anything! Later, on the day she was born, I noticed her making noises and sweating, and I asked a nurse if this was normal. The nurse kept an eye on her, and a few hours later she was lying there lifeless, and she could barely open her eyes, so I ran to a get a nurse.
The nurse checked her blood sugar and it was 0. The nurses panicked and took her to the ICU unit. She stayed until she was 5 months old. Many tests were run on Dhara and they tried many medications. Finally, she stabilized. We were told she had one of worst cases they had seen in Glasgow, In 4 years.
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As a result of hyperinsulinism, she has had numerous seizures. She had one a few months ago. She takes diazoxide three times a day, and she has a subcutaneous infusion of octreotide through an insulin pump.
