The state’s newborn screening program is being expanded to include testing for a rare, but deadly disorder. Kim Piper, with the Iowa Department of Public Health, says – until recently – screening newborns for severe combined immune deficiency had not been possible.
“(SCID) is a set of conditions that the newborn inherits from the parents that affects the immune system, so the baby doesn’t have the blood cells to fight off infections,” Piper said. SCID, sometimes referred to as the “bubble boy” disease, is extraordinary.
The incidence of SCID is estimated to be one in 50,000 to 60,000 live births. If untreated, most infants with SCID die before reaching their first birthday. “So, screening is very important,” Piper said. “If we can detect these babies before they have a life-threatening infection, then we can get them into treatment…which is usually a bone marrow transplant.”
Iowa’s newborn screening program allows for the testing of more than 50 disorders from just one droplet of blood. SCID is referred to as the “bubble boy” disease because its victims, such as David Vetter, are sometimes forced to live in a sterile environment.
Vetter’s story inspired the 1976 made for TV movie “The Boy in the Plastic Bubble,” starring John Travolta.