Horseheads baby suffers rare condition

Susan and Ron Waters of Horseheads looked over at their baby in the delivery room in Arnot Ogden Medical Center and noticed he had turned blue. He wasn't breathing. Born just a day before, on June 29, Xander would have another near-fatal episode at home before being diagnosed at UR Medicine's Golisano Children's Hospital with congenital central hypoventilation syndrome (CCHS), a rare disorder that affects one's breathing. 

Without a clear diagnosis, Xander’s medical team at Arnot had him transferred to Golisano Children’s Hospital, where neonatologists and pediatric pulmonologists teamed up and were able to determine he has CCHS. The part of the brain that controls one’s breathing doesn’t always communicate with Xander’s lungs. CCHS affects about only 1,000 people in the nation.

The Waters family moved into the new Golisano Children’s Hospital Neonatal Intensive Care Unit (NICU) July 8, the day after it opened, and have been there since.

Click on the image below to watch some of Xander's story:

Neonatology is one of the seven priority programs of the current Golisano Children's Hospital campaign. Learn more about the program and how you can make a difference in the care of our tiniest patients.