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.
Nine-year-old Abby Bauleke found what she was looking for in a most improbable spot. She had tagged along, following her older brother and sister to their basketball, football and soccer games — waiting for her time to come. Then leukemia and a paralyzing infection threatened to put a damper on this bundle of energy and enthusiasm, who lives in Savage.
On a recent afternoon, Abby slipped effortlessly out of her wheelchair and into an indoor swimming pool tucked into a nondescript industrial maze of warehouses in Eden Prairie.
“I feel free when I’m swimming,” Abby said. “And my teammates are great.”
As she pulled herself through the water, lap after lap, Abby was surrounded by other children swimming, splashing, kickboarding and laughing. The Clownfish Swim Club was at it again, a unique team comprising more than two dozen kids with autism, Down syndrome and other disabilities that all melt away once they break the water’s surface.