"Physicians often paint a limited picture of today's opportunities for people with Down syndrome, and new parents, with no introduction to Down syndrome, have nothing else to believe," Skotko said. "It is not until they meet other families and receive accurate information that they realize their physicians' words are often limiting."
People with Down syndrome have increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions, according to NDSS. However, their long-term health outlook has improved. In 1983, the life expectancy for a person with Down syndrome was 25; today it is 56.
"Kristin gives me a charge and a purpose to advocate on behalf of a forgotten segment of society," Skotko said.
After much soul-searching with her family, Allard continued her pregnancy and gave birth to Ben, who is now 6.
It is a decision she hasn't regretted for one minute. "Thank God we went ahead with it," she said. "He's an absolute joy in our lives."
Allard added that Ben, who attends kindergarten at a public school in Franklin, Mass., is doing all the things doctors told her he wouldn't be able to -- and more. Allard also has a son, Max, 2, who does not have Down syndrome.
After Ben was born, Allard became very involved in the National Down Syndrome Congress, and talks to other parents going through the same tough decisions after learning they may have a child with a disability.
"I totally appreciate how somebody feels when they get that information," she said. "It's devastating."
For Allard, the decision to keep Ben was the right one for her and her family, but she says she is not judgmental of parents who may opt to terminate a pregnancy. The most important thing, she says, is that parents be given enough information to make the decision that's right for them and know there are support networks out there.
Based on the comments in his survey, Skotko has come up with the following recommendations for communicating a diagnosis of Down syndrome:
Results from the prenatal screening should be clearly explained as a risk assessment, not as a "positive" or "negative" result.
Results from the amniocentesis or CVS should, whenever possible, be delivered in person with both parents present.
Sensitive language should be used when delivering a diagnosis of Down syndrome.
If obstetricians rely on genetic counselors or other specialists to explain Down syndrome, sensitive, accurate and consistent messages must be conveyed.
Physicians should discuss all reasons for prenatal diagnosis including reassurance, advance awareness before delivery of the diagnosis of Down syndrome, adoption, as well as pregnancy termination.
Up-to-date information on Down syndrome should be available.
Contact with local Down syndrome support groups should be offered, if desired.