The Incubator #386 - 🟢 HOT TOPICS 2025 COVERAGE - Should All Newborns Be Screened for Congenital Hyperinsulinism?
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Dec 8, 2025 
Julie Raskin, a passionate parent advocate with Congenital Hyperinsulinism International, shares her personal journey following her son's brain injury caused by undiagnosed congenital hyperinsulinism. She reveals surprising registry data showing that 28% of affected infants lack traditional risk factors and highlights the urgency for universal newborn glucose screening. Julie introduces the 'Glucose is a Vital Sign' campaign and discusses ongoing research into early glucose and ketone monitoring to identify at-risk infants while avoiding unnecessary treatment for healthy newborns.
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Personal Story That Sparked Advocacy
- Julie Raskin's son was born with congenital hyperinsulinism in 1996 and suffered brain injury from undiagnosed prolonged hypoglycemia.
- She turned that experience into advocacy and founded or joined Congenital Hyperinsulinism International to prevent others' harm.
Risk Factors Miss Many Cases
- CHI registry data show 28% of affected infants lacked traditional risk factors like abnormal birth weight.
- Many at-risk babies still get discharged improperly and then experience a dangerous break in care.
Use International CHI Guidelines
- Do consult the international diagnostic and hypoglycemia guidelines available at congenitalhi.org for management and screening principles.
- Use those resources to reduce preventable brain damage from prolonged hypoglycemia.