Meet Abby Braithwaite, the mother of two young children. Her oldest, Adara, now six, was just 12 hours old when Abby and her husband David learned she had been born with an extra 21st chromosome. Also known as Trisomy 21, the condition affects 1 in 691 live births and is the most commonly recognized genetic cause of intellectual disability.

Down syndrome delays physical and intellectual development. Low muscle tone, a single crease across the palm of the hand, a flattened facial profile, and an upward slant to the eyes are among the physical characteristics.

Life With a Down Syndrome Child

Braithwaite spoke with QualityHealth about the joys and challenges of raising a child with Down syndrome. "Adara is delightful. She's outgoing and loving and really empathetic," shes says of her daughter. "My life isn't ruined by having a child with Down syndrome; Adara doesn't suffer from it. Sure, life is complicated, but raising any child is complicated."

Braithwaite, who works with genetic specialists and prospective parents volunteering with a Down syndrome advocacy group on the west coast, says some doctors disperse dated information, which perpetuates the myths surrounding Down syndrome. "Our anecdotal information—along with some studies—suggests many people hear only gloom and doom with regards to Down syndrome, as well as outright untruths about the condition."

Here, Braithwaite helps dispel some common myths about children with Down syndrome:

Myth: Children with Down syndrome are born mostly to older women
There are approximately 350,000 Down syndrome individuals in the United States; 5,500 Down syndrome babies are born annually and 28 years old is the average age of mothers who give birth to a child with the disorder. While it's true that younger women give birth more often to children with Down syndrome, it's largely due to the fact that they give birth in greater numbers than older women do. The risk for conceiving a child with Down syndrome increases with age—at 25, women have a one in 1,250 chance; at 40 the number is one in 106.

Myth: Children with Down syndrome have severe health issues
Approximately 40 percent of Down syndrome children have congenital heart defects, according to the National Association of Down Syndrome (NADS). When a child is born with Down syndrome an echocardiogram is usually performed to identify any serious cardiac problems. Braithwaite's daughter was born with two holes in her heart. "Down syndrome can come with scary medical complications but most resolve on their own or are treatable with fairly routine surgery," says Braithwaite. "By the age of three, the holes in Adara's heart closed up on their own and this experience is not unusual."

And while it's true that children with Down syndrome have a higher incidence of respiratory, vision, and hearing problems as well as thyroid disorders, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. "Our second child, Corwin, now 2, was born without Down syndrome and was more medically fragile from the outset," says Braithwaite. "In fact, he was the one in the hospital with RSV."

Myth: Children with Down syndrome don't live long lives
Many people wrongly believe people with Down syndrome don't live beyond the age of 40. In fact, the life expectancy is 55 and many live into their 60s and 70s. "Another myth is that people with Down syndrome can't reside on their own. But many do well living in the community with supports," assures Braithwaite. "They may even have jobs and pay taxes."

Myth: Children with Down syndrome have severe mental retardation, can't learn to read, and aren't employable
The level of mental retardation varies widely in children with Down syndrome but most experience mild to moderate retardation. Physical, speech, and developmental therapies—as well as early intervention services—enable many of these children to enroll in their neighborhood schools where they are mainstreamed. Increasingly, they receive regular high school diplomas and even participate in post-secondary education such as college according to the National Down Syndrome Society (NDSS).

"There is a wide range of abilities among people with Down syndrome, but with appropriate supports any child can thrive," says Braithwaite. "Adara walked, talked, and potty trained later than many children, but successfully completed kindergarten in a general ed classroom. She is learning to read and write and is looking forward to first grade in September."

NDSS also reports that adults with Down syndrome are employed in small- and medium-sized offices by banks, corporations, nursing home, hotels, and restaurants. They work in clerical positions, childcare, the computer industry, sports, music, and entertainment, too. 

Myth: Children with Down syndrome negatively impact families
Parenting isn't all sunshine and roses, according to Braithwaite, but her family wouldn't have it any other way. "Because of Adara we've been connected with wonderful people we'd never have met. She's spunky and vivacious—opposite in so many ways from my husband and I who tend to be shy," she says proudly.

People also worry that having a child with Down syndrome will be detrimental to their marriage, but Braithwaite says the bond with her spouse has been strengthened. Coming from an intellectual family, she worried initially about how they'd respond to her daughter. "It's nice to have someone in our mix who isn't a great intellect. Adara is upbeat and never dwells on the negative," says Braithwaite, explaining how her daughter manages to bring out the best in people. "Perhaps it's because she lives in the moment and has a more optimistic outlook on everything."




Interview with Abby Braithwaite, mother of a child with Down syndrome

The National Association of Down syndrome,

The National Down syndrome Society,

The New York Times,

The American Congress Obstetrics and Gynecologists,

The American Association of Family Physicians,

Statistics from: "Down Syndrome: Prenatal Risk Assessment and Diagnosis" (Ag. 2000) by David S. Newberger, MD, clinical assistant professor in the Department of Family Medicine, State University of New York at Buffalo, where he also completed a faculty development fellowship. (Summary of finding posted on AAFP website)