Dr. Roger Ladda, a pediatrician and clinical geneticist at Penn State Milton S. Hershey Medical Center, said many families who have a child with Down syndrome find it is not the devastating event they expected.
“There is the recognition that the perfect baby they were expecting didn’t arrive, but our experience is that parents rapidly adapt,” he said. “Fundamentally, that general perception about Down syndrome is founded on misinformation of the ancient past leading to anticipation of a much worse condition. The outlook for children with Down syndrome is really quite positive. Their survivability and quality of life has been transfigured in the last 40 years.”
People with Down syndrome are living longer now — to age 50 and well beyond — thanks to advances in medical technology that can repair many of the congenital malformations they were born with, Ladda said.
“The heart is the major issue,” Ladda said. “Forty to 60 percent of Down syndrome babies have heart problems, and it’s essential that they be evaluated in the newborn period.” Often the babies suffer from an atrial septal defect — a hole between chambers of the heart, which can usually be repaired with surgery, he said.