‘As more than 90 percent of women carrying a child with DS choose to end pregnancies, parents raising these kids say they’re a ‘gift”

In its coverage of recent research documenting widespread terminations of pregnancies involving Down syndrome, ABC News shifts its focus to the growing concern that women are making their decisions based on misinformation and myths about the disorder.

Author Susan Donaldson James interviews Dr. Brian Skotko, who says research suggests that mothers are getting inaccurate, incomplete and sometimes offensive information. Advocates for people with Down syndrome worry that the decline in births will lead to reduced funding to study the disorder.

Boston filmmaker Melanie McLaughlin had no knowledge of Down syndrome when her daughter Grace was born, but was encouraged after the First Call program of the Massachusetts Down Syndrome Congress introduced her to a family of a five-year-old with the syndrome.

“She played hide and seek, and she kept jumping out, telling us where she was hiding,” McLaughlin said. “She was amazing. I was thinking she would be sitting in a chair unresponsive and drooling. “Actually, she was much like our other children,” McLaughlin said. “We thought, maybe we can go forward.”

A Connecticut woman told ABC News that she terminated her pregnancy after Down syndrome was diagnosed and her doctor “didn’t paint the brightest picture” and didn’t introduce her to anyone with the condition. She said the stress of the experience made her feel that “we were falling apart.”

A Utah mother said she and her husband were given scant support after a Down syndrome diagnosis and wish they had received accurate information and positive feedback. She and her husband decided not to terminate. Their daughter is now thriving in first grade..

“The most important things you can provide are accurate, up-to-date information, and what it’s like to parent a kid with Down syndrome, just to have someone who walks in those same steps to listen and share their own story,” said Sarah Cullen, family support director for First Call, which takes no position on whether to terminate pregnancies.

At last count, the story had drawn more than 170 comments. Many of the commenters are arguing about abortion rights, while others say the author should have done more to explore the lives of adults with Down syndrome, and did not adequately take into account the shared public cost of their ongoing care. Yet another said the real tragedy here is a society in which caring for people with disabilities is widely perceived as impossibly burdensome, and the health care system cannot be counted upon.

(Photo from ABC News)

Writing in the [UK] Guardian, columnist Tom Shakespeare says the statistics on Down syndrome diagnoses mask the “human cost” of the UK’s prenatal screening program.

Shakespeare supports a woman’s right to choose, as well as the right to terminate a pregnancy in which Down syndrome is diagnosed. But he says scientists need to examine the high emotional price that couples are paying for prenatal testing, as when invasive tests cause the miscarriage of healthy pregnancies, or when tests pose “morally and emotionally burdensome choices” for couples.

An excerpt:

I have long felt that it is a priority to provide better information to prospective parents about what Down’s syndrome is, and the effect it has on individuals and their families … I believe as much money should be spent on information and counselling as is spent on the technology, because humans matter more than statistics and cost/impact calculations.

Shakespeare is among the developers of a website that provides information about various disabilities that can be diagnosed prenatally.

Writing in the [UK] Guardian, Carol Boys says she supports a woman’s right to choose whether to have a child with a disability, but cherishes her own son with Down syndrome. An excerpt:

Some might say that because I didn’t have a choice when my son Alex was born 25 years ago, I don’t know what it’s like to have to think about termination as an option. Quite frankly, I’m glad that I didn’t have to think about it, because it made it so much easier for me just to accept my son for what he is – a fantastic human being.

…  let’s try to be a bit more positive about people with Down’s syndrome. After all, most of them can read and understand what is being written and said about them.

Carol Boys is chief executive of the UK’s Down Syndrome Association.

See also: Women ‘catapulted into the turmoil’ of Down syndrome screening — BBC audio. Boys says women should know more about the system for diagnosing the condition before they are tested.

Related post here.

Interviewed on the FOX 25 Boston Morning News, Dr. Brian Skotko foresaw a “collision” between increasingly sophisticated prenatal tests and doctors who have not been trained to interpret the tests or deliver up-to-date information about detectable conditions to prospective parents.

Skotko’s recent research found a decrease in the number of babies born with Down syndrome, a trend anchor Gene Lavanchy described as “disturbing.” The reduction in births coincides with the expanding reach of prenatal testing and selective termination.

Skotko said doctors want to do a good job but they’re not being given training and information. He called for increased training for doctors. Appearing with him was Michele Hoenig, mother of a toddler with Down syndrome.

Beverly Beckham writes in the Boston Globe that her granddaughter, Lucy, who has Down syndrome, “is part of a class of people that is quietly being eliminated in my country.”

She says Lucy certainly has challenges caused by Down syndrome, but she also has her own unique skills and abilities.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future — that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism — would women take it? And seeing what would be, would they choose to abort?

Related posts here and here.

(Boston Globe photo)

In The Checkup blog for the Washington Post, Jennifer LaRue Huget cites a recent article by Dr. Brian Skotko and asks, “What would the world be like if there were no more people with Down syndrome?”

Huget says Skotko’s observations in the Archives of Disease in Childhood resonate beyond just one genetic condition. Skotko explored the impact of prenatal screening and selective termination on the number of babies born with Down syndrome, and called for a public conversation about the ethics of selective termination.

Commenters to the Post site were divided, with some writing that their children with Down syndrome had enriched their lives and others defending the right of women to selectively terminate without outside influence or intervention.

Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.