Mothers of children with congenital hyperinsulinism (HI) have long contended there should be universal blood sugar screening for all newborns before they leave the hospital. Some pediatric endocrinologists who specialize in caring for babies and children with HI also believe current protocols for blood glucose screening of newborns are inadequate and must be changed. Now, a group of neonatologists has published a groundbreaking paper in the Journal of Clinical Medicine, with a proposal to screen all newborns for the condition.
In “Proposed Screening for Congenital Hyperinsulinism in Newborns: Perspective from a Neonatal–Perinatal Medicine Group,” published on May 17, authors from Pennsylvania State University propose doing a blood glucose and ketone screen before babies are discharged for home (at the very same time that newborn screening for other conditions occurs). To prove their point of why universal screening is necessary, the authors include data from Congenital Hyperinsulinism International’s HI Global Registry: “These data from the Hyperinsulinism Global Registry show that current clinical practices are not effective in screening for … HI.” Newborns with HI who were discharged from the hospital without a blood glucose level screen were at a much higher risk of having developmental delay from prolonged hypoglycemia than those babies who did have their blood glucose checked before leaving the birthing facility.
I am just thrilled there are neonatologists and perinatologists who, through their publication, are communicating to others in their field about this key issue. These physicians recognize and have now published vital information about how not performing a very simple and inexpensive test leads to lifelong disability for a significant portion of babies born with HI. Read and share this important article:
Universal newborn screening for HI, is one of the research priorities of the CHI Collaborative Research Network (CRN). There is a working group of the CHI CRN focused on research and advocacy for universal newborn screening. You can read more about the CRN here: CHI Collaborative Research Network.
CHI’s Information sharing about the importance of timely diagnosis for all with HI is made possible by a grant from the European Commission: LightCure – 101080327.
