Nina Fuller of Newburgh, Indiana, told ABC News how she knew nothing about parenting a child with Down syndrome when she received her diagnosis. She assumed her child wouldn’t be able to interact with the rest of the family and would intrude on the lives of her three brothers and the family. Those fears never materialized. The Fullers went on to adopt another daughter with Down syndrome.
In the December issue of Pediatrics, The Center of Disease Control researchers stated that U.S. babies born with Down syndrome have increased by nearly one-third over the last three decades. This is the most common genetic condition in the United States, which occurs when an embryo carries three copies of the chromosome 21 instead of the normal two.
Despite the higher number, an estimated 92 percent of all women who received this prenatal diagnosis chose to terminate their pregnancies reports Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital, after reviewing research worldwide. The genetic diagnosis often comes as a shock and many women make their decisions based on misinformation and myths.
According to Vitals.com, Dr. Skotko received his medical degree at Harvard University and completed his residency at Children’s Hospital.
The CDC believes the increase from 1979 to 2003 is probably because of a worldwide trend for women to wait longer to have children and predict those numbers are likely to rise over the next several years. The risk of this defect becomes five times greater in pregnancies of mothers over age 35. Governor Sarah Palin had her son Trig last year at the age of 44, an age when the chances of having a child with Down syndrome is 1 in 35.
Approximately 400,000 Americans are born with Down syndrome. These children are at increased risk for medical problems such as heart defects, hearing and vision problems as well as respiratory problems. About 90 percent will celebrate their fifth birthday and the average life expectancy is over 50.
Accurate figures are necessary to plan for health care services for these individuals as they get older and may need specialized care. Until the CDC research was released, just one study had been done in a single city to investigate Down syndrome rates in children and adolescents, reports Reuters. This new study came up with their numbers after analyzing birth defect registry data from 1979-2003 in 10 different U.S. regions.
Skotko worries that if Down syndrome cases decline in the U.S. funding for studying this condition will dry up. He also fears that without being properly educated people will deny themselves what some call the “gift” of raising children with Down syndrome.
“I am concerned about mothers making that informed decision,” he said. “Are they making it on facts and up-to-date information? Research suggests not, and that mothers get inaccurate, incomplete and sometimes offensive information.”