WASHINGTON (BP)–Kadi Coe was almost midway through her pregnancy when she received the news her baby was diagnosed with Down syndrome.
“When my husband and I first found out the news, we were devastated,” Coe said, fighting back tears as she spoke on the phone from her Michigan home. “It felt like someone had died … and we really struggled. I was 29 years old at the time, and I didn’t think young women could have children with Down syndrome at that age.”
The diagnosis was finalized after Coe received results from an amniocentesis test, a prenatal test designed to find conditions such as Down syndrome, which normally results when a person has three copies, rather than two, of chromosome 21.
Coe, whose daughter turned 1 year old in November, represents thousands of women who experience pain and grief upon receiving diagnoses of Down syndrome or other conditions for their children.
Thankfully, Coe’s physician provided encouragement during her pregnancy, but many advocacy organizations believe doctors oftentimes deliver the diagnosis as “bad news” to parents instead of supporting mothers to follow through with their pregnancies.
The organizations see a great need for doctors to offer more accurate and complete information to parents whose children have been diagnosed with Down syndrome or other conditions. Down syndrome, for instance, typically is marked by mental and physical impairments, but people with the condition have a wide range of abilities.
Often, a doctor’s delivery of the “bad news” results in parents making a lethal choice for their baby; an estimated 90 percent of children diagnosed with Down syndrome are aborted. That abortion rate holds for unborn babies diagnosed with spina bifida, cystic fibrosis and dwarfism, according to the office of Sen. Sam Brownback, R.-Kan.
Brownback, a pro-life leader in Congress, addressed the problem by sponsoring a bill that was signed into law Oct. 8 by President Bush.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act requires parents who receive a diagnosis of Down syndrome or another disability to be provided the latest information regarding the condition and be informed of support services available. The law also establishes a registry of families willing to adopt children with special needs.
“All too often, the road to abortion is paved with negative words of medical providers who sell it as the ‘compassionate’ choice,” said Marjorie Dannenfelser, president of the pro-life Susan B. Anthony List, in a written statement. “There is nothing compassionate about eliminating entire categories of human beings…. The transforming effect of children with special needs is what this culture needs more of — not less.”
Pro-life advocates hope Brownback’s measure will reduce the abortion rate for children diagnosed with Down syndrome and other conditions.
David Tolleson, executive director of the National Down Syndrome Congress, said he hopes doctors will choose to share more information with their patients as it becomes available.
“As far as the termination rate, we never know what goes into a woman’s decision related to that,” Tolleson told Baptist Press. “What we do know by studies is that doctors traditionally do a poor job delivering a diagnosis. Our point of view is mothers need to have all the information so that whatever decision they make will be an informed decision and not the doctor’s prejudices.”
Some advocacy organizations already are trying to educate doctors on what can be a life-or-death issue.
Families Exploring Down Syndrome (FEDS) supplies medical professionals with photos and information about the conditions of people with Down syndrome. FEDS encourages doctors to learn more about the capabilities of special needs children.
Lucy Talbot, president of FEDS, does not believe abortion is the answer for babies diagnosed with disabilities. If doctors could see the capabilities of these children, it would change the way they present the diagnoses to families, she said.
“A physician’s attitude can make all the difference in the world,” Talbot said. “If [doctors] are doom and gloom and tell parents their child will be nothing, their hopes will be shattered. The more information they give out, the better it will be for everybody.”
In 2003, the National Down Syndrome Society developed the Changing Lives Program in order to educate medical professionals on the clinical and developmental needs of people with Down syndrome.
The program also supplies materials to expectant parents, prepares professionals to deliver diagnoses to families and provides families with both local and national resources.
Martha Ostendarp, early matters coordinator for the Down Syndrome Association of Greater Cincinnati, works directly with parents who decide to follow through with their pregnancies. Ostendarp is also the grandmother of a 5-year-old boy with Down syndrome.
“When I walk into [my grandson’s] house, he announces me, saying, ‘Grandma’s here,'” Ostendarp said. “He makes you feel good about yourself. That’s the best thing I can summarize about a child with Down syndrome.”
Elizabeth Wood is an intern with the Washington bureau of Baptist Press.