WASHINGTON — What do pro-abortion Sen. Ted Kennedy, D-Mass., and pro-life Sen. Sam Brownback, R-Kan., have in common?
They both oppose a practice that Brownback calls “one of the dirty little secrets going on in society right now.”
He is referring to what happens after a woman is told that the child she carries will be born with Down syndrome.
“It’s just become almost common practice to abort that child,” said Brownback.
Gina Urbanski of Papillion, Neb., can’t imagine such a “solution.” Her sixth child, Nathan, was born with Down syndrome New Year’s Eve last year. She and her husband, John, didn’t know that until after his birth, though; the couple had refused an amniocentesis because of its risk of miscarriage.
According to former presidential candidate Brownback’s office, 90% of children prenatally diagnosed with Down syndrome are aborted. The abortion rate is similar for children prenatally diagnosed with other conditions such as spina bifida, cystic fibrosis and dwarfism.
In an effort to turn the tide, the senator has joined forces with Kennedy. Both Catholics, they are co-sponsoring the Prenatally and Postnatally Diagnosed Conditions Awareness Act, first introduced in the 109th Congress in 2005 but reintroduced this July.
For the Urbanskis, various signs led them to seek a test to determine if their son had Down syndrome. They received confirmation of that when Nathan was about 7 months old.
The $25 million bill would require that parents who receive a diagnosis of Down syndrome or any other condition, prenatally or up until a year after birth, will be provided current information about the nature of the condition and connected to support services and networks.
The Urbanskis will face challenges. Surgeries, for one. Nathan also is developing slower than their other children — getting the 10-month-old to sit up for the first time is the current challenge. His education also will be a concern. Then there’s the fear of discrimination he might face and of who will care for him if his parents aren’t there any longer.
And yet, said Gina, “It’s a blessing. It’s really brought our family a lot closer together.”
In an interview with the Register, Brownback conceded to a strange bedfellow partnership with pro-abortion Kennedy, with whom he has collaborated on immigration issues.
“He’s not given to pro-life causes,” Brownback said. “[But] they’ve been very good on this one. We want them on it. We first went to his staff through the disability community. We’re working with the disability community, and the Kennedy family is a strong supporter of the disability community, Special Olympics and a lot of work.”
Yet in his press releases, Kennedy doesn’t repudiate the practice of aborting Down syndrome babies. “Access to the best support and information about the condition, and the quality of life for a child born with that condition, can make all the difference to a woman trying to make an informed and difficult decision,” he said.
Dr. Thomas Murphy Goodwin, chief of the Division of Maternal-Fetal Medicine at the University of Southern California, pointed to at least three factors pushing the high rate of aborted Down syndrome children: diagnoses without available treatments, physician ignorance and litigation.
Since the 1970s, the most familiar way to detect Down syndrome and other disabilities is through amniocentesis, a sampling of amniotic fluid to detect chromosomal abnormalities like the extra Chromosome 21 that causes Down.
According to the National Down Syndrome Society, the syndrome occurs in one out of every 733 live births, and more than 350,000 people in the United States have the genetic condition.
Amniocentesis typically is performed at 14 to 20 weeks of pregnancy, according to the American Pregnancy Association. Chromosomal abnormalities also can be detected by Chorionic villus sampling, which involves removal of chorionic villi cells from the placenta at the point where it attaches to the uterine wall, notes the American Pregnancy Association. Chorionic villus sampling can be performed as early as 10 to 13 weeks of pregnancy.
Each test carries risks, the most notable being an increased risk of miscarriage for women who have amniocentesis. The American Pregnancy Association lists a risk of miscarriage ranging from 1 in 400 to 1 in 200 pregnancies.
The Catechism of the Catholic Church teaches: “Prenatal diagnosis is morally licit, ‘if it respects the life and integrity of the embryo and the human fetus and is directed toward its safeguarding or healing as an individual. It is gravely opposed to the moral law when it is done with the thought of possibly inducing an abortion, depending on the results: a diagnosis must not be the equivalent of a death sentence’” (No. 2274).
Goodwin pointed out one of his great frustrations with such tests — treatment options are few after results indicate a genetic disorder.
“One of the biggest issues in medicine today is that (the) prenatal diagnosis ability to say there’s something wrong has gone way ahead of the ability to do anything about it,” he said. “Even though people are aware of fetal surgery programs … very few babies have conditions that can actually be treated in utero. We have our own fetal surgery program and our doctor does approximately 150 cases a year, for treatment of conditions. Most conditions you diagnose in utero, it’s sort of like if you went to see a doctor 60 or 80 years ago. There really weren’t any treatments, and that’s how we are in prenatal diagnosis.”
A second factor resulting in more abortions, he said, is doctors who don’t know what to recommend to parents whose child will be born with a condition such as Down syndrome.
“That creates a huge incentive for termination because of this uncertainty,” Goodwin said. “The person who makes the diagnosis has never cared for a child who has that disease. The doctor has to counsel the patient right there, and often times the doctor thinks, ‘I wouldn’t want this. I don’t know what to say.’ Patients pick up on the fear, confusion, and they’re already concerned.”
But perhaps the most damning sentence of all for in utero children diagnosed with such disabilities is a legal system stacked against them.
“One of the strongest forces that push the entire prenatal diagnosis industry is fear of wrongful birth and wrongful life litigation,” Goodwin said. “Parents come and say, ‘If we had known this diagnosis we would have chosen a different treatment — abortion. Therefore you are responsible for all the cost related to this and the pain and suffering related to this child being born.’
“Wrongful life is closely related to the concept of wrongful birth, and basically a child is the plaintiff. Those kinds of statutes are operating in most of the states.”
To protect themselves, many doctors must inform patients that abortion is one of their options. If a test to determine a chromosomal abnormality is refused, doctors must document the refusal.
“Even if you’re a doctor who wouldn’t want to do all this, you must do it because your insurance carrier will drop you immediately and you will never practice medicine,” Goodwin said. “It’s one of the strongest forces in all of obstetric medicine at the present time; a huge incentive for the doctor to encourage going with abortion.”
Brownback said insurance companies “are not speaking out on this. They don’t want a more expensive child that’s born. So the system all pushes really for more abortions.”
Children who are diagnosed with Down syndrome by chorionic villus sampling can be aborted as early as 13 to 14 weeks, Goodwin said. If a diagnosis is made by amniocentesis, abortion might not occur until 20 to 23 weeks.
‘Give Us a Chance’
Support has been essential, as has information Gina Urbanski has found on the Internet. At Goodwin’s facility, parents whose children are born with disabilities “hear everything,” the doctor said. That includes information on the sort of life their child will live or what surgeries might be needed.
Family counselors help indicate how a family’s dynamics might change. Social workers, geneticists, surgeons, nurses, radiologists and others provide input “before the baby is ever born,” Goodwin added.
As for Down syndrome children, “There’s a greater understanding that if the children receive regular stimulation and education and prompting that their ability to function in society is much increased,” Goodwin said. He suspects similar information provided everywhere could make a difference, though he’s not sure to what degree.
Among the Brownback/Kennedy Act measures are the expansion and further development of a national clearinghouse for parents of children with disabilities and of national and local peer-support programs. It also calls for the creation of a registry of families willing to adopt children with special needs. The bill calls for $5 million in funding from 2008-2012.
Brownback pushed adoption fervently.
“They don’t need to kill the child,” he said. “We have people that want to adopt the children.”
He gives the bill a “50-50” chance of passing, “particularly if we can get more families with disabilities, and particularly Down syndrome families, to stand up to the media and say, ‘We just want to live. That’s all we’re asking for.’”
Anthony Flott is based in Papillion, Nebraska.