What to Expect When Your Child Has Down Syndrome

Sue was 26 years old when she had baby Marc. Sue was a registered nurse, and, aware of the possible problems that can occur during a pregnancy, she asked her doctor for an amniocentesis. She was told she was too young and had nothing to worry about. Sue had a good first pregnancy without any complications. During Sue's 38th week of pregnancy, Marc entered the world. He was just 3 hours old when his parents were told he had Down syndrome.

Rachael was 22 years old when she had baby Abbey. After a full-term and uneventful pregnancy, Rachael gave birth. After two weeks, her doctors were suspicious and ordered tests from another lab. The results validated their suspicions: Abbey had Down syndrome.

These couples reacted as any loving parents would. At first, Sue and John were surprised, while Rachael and Troy say they were in denial. "Overall, the news that Marc had Down syndrome was difficult, but it never took the love we felt for him," Sue says. "Like all new parents, we grieved the child we had imagined during my pregnancy. We had imagined him or her and fantasized how he would be, but reality quickly sank in."

"I cried as soon as I heard, but it only took a few days before it sunk in and I realized it didn't really matter," Rachael says. "It wasn't until we found out about her heart defect that I became terribly upset, scared, and angry. Troy was great from the start. As soon as he was told, he said, 'She's just a special little girl—that's all.'"

Most parents require some adjustment to the situation. "There is much to discuss with parents about this diagnosis," says Dr. W. Carl Cooley, medical director at the Crotched Mountain School and Rehabilitation Center in Greenfield, New Hampshire. "Every parent has different needs, different personal and cultural backgrounds, and different resources affecting their response to this news. I remind all parents that their new baby is first a baby and new family member and that Down syndrome should remain a secondary, though obviously important, factor."

Raising a Child with Down Syndrome

Still, there are serious issues to consider. The National Down Syndrome Society (NDSS) points out there are generally more health risks for children with Down syndrome. Up to 50 percent of all Down syndrome babies are born with congenital heart defects. Marc underwent surgery at the age of 2 to correct this problem, and Abbey was only 6 months old at the time of her surgery. Both children recovered well and are now in relatively good health.

Unfortunately, early mortality is often a result of these heart defects. Some Down syndrome children have other, related health problems, leaving their health less stable and more fragile than that of a child without Down syndrome. "I was terrified of losing her," Rachael says. "She was and is so small I couldn't imagine how she would ever make it. Her health was my main concern for so long. I almost couldn't believe it when she started to flourish."