October is Down Syndrome Awareness Month, a time to update your knowledge of a critical human rights issue which has made headlines recently. Many of these have extolled the “life-saving” advantages of a new blood test, administered in the first trimester of pregnancy which can determine, with high accuracy, if an unborn child had Down syndrome. The test, MaterniT21, will eliminate the miscarriage risk of CVS and amniocentesis, and is far more reliable than current early blood tests. But it is not a life saving discovery for everyone. The fact is that 92% of mothers who discover that their unborn child has Down syndrome choose abortion.
Researchers like Dr Brian Skotko of Children’s Hospital in Boston heard the complaint from thousands of mothers that once the diagnosis is made, it is presumed by the medical staff that she will have an abortion. There is not enough effort to inform women about the positive aspects of life with Down syndrome, the support services available, or that there is a waiting list of hundreds of families waiting to adopt a child with Down syndrome.
Early screening results like those of MaterniT21, may arrive before the mother has had a chance to bond with her baby, and the thought of having an abortion at 8 weeks is less abhorrent to many women than at 18-22 weeks when the results of amniocentesis are available, So, abortion rates for babies with Down syndrome will are likely to increase when the test is available. To make matters worse, soon pre-natal test swill be offered free to all expectant women, regardless of age, thanks to regulations requiring preventative care under Obamacare (officially known as the Patient Protection and Affordable Care Act)Mark Leach an attorney and father of a daughter with Down syndrome writes in The Public Discourse;
The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care—and thus prenatal testing for “genetic or developmental conditions.” 1
There are national health care systems, who, because of such universal prenatal testing, expect that Down syndrome will in this way be eliminated from the population as a cost-saving measure.
A medical review from 2002 of elective abortions in the UK and the US found that around 92 percent of all fetuses diagnosed with Down’s syndrome were aborted. In Denmark, medical experts estimate the rate of abortions to be even higher. If the current trend continues, it is predicted that the last Down’s syndrome baby in Denmark could be born in 2030.2
This disturbing trend towards universal pre-natal diagnosis without informed consent will be addressed in an upcoming conference sponsored by Medical Students for Life at the Family Research Council on January 22, 2012 and can be live-streamed on their website.
The looming threat that there will be few babies born with Down syndrome belies the truth that families of those with Down syndrome consider them to be a blessing. This is confirmed by a new study by Dr Brian Skotko who reports, “We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found.
• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 5% of parents felt embarrassed by their child
• 97% of brothers/sisters, ages 9-11, said they love their sibling.”(from Dr Skotko’s blog)
The survey results have just been published in the American Journal of Medical Genetics. and received significant press. However positive the reaction, it isn’t sufficient to counteract negative attitudes, according to Dr. Arthur Caplan, Head of the University of Pennysylvania’s College of Bioethics, who doubted that the survey would convince women to carry their babies with Down syndrome to term because, “many are having smaller families. I do not think they will be willing to accept a child with cognitive and other impairments as might parents of bigger families. Also they are bombarded with messages of perfection in babies and about parenting from all manner of media and this shapes their view of disability.” Caplan says, that in order to change these statistics, “one would need to change attitudes overall about disability and perfection in society. Nevertheless, he asserts, “we will include these studies in student reading” as well as classroom visits from “parents from our world famous children’s hospital who frequently come to class along with their babies and kids.”
Such efforts are part of the good news about Down syndrome: a growing effort to raise awareness that there has never been a better time to be born with Down syndrome. Educational opportunities and advances in research are bolstered by unequalled political activism.
Rep Cathy McMorris Rodgers (WA-R) whose son Cole has Down syndrome, formed the Congressional Down Syndrome Caucus and has recently submitted two bills which would dramatically increase research funding to improve the cognitive delays inherent in Down syndrome.
The Trisomy 21 Research Resource Act of 2011 authorizes current efforts already underway by national patient advocacy organizations, together with the National Institute of Child Health and Human Development, to establish three research databases that will provide the research community with access to information that has been otherwise hard to obtain. The second bill, the Trisomy 21 Centers of Excellence Act of 2011, recognizes six centers of excellence around the nation that will be dedicated to conducting and coordinating translational research. (from her website)
In concert with Rep McMorris Rogers’ effort, the NIH issued a recent press release stating, “The National Institutes of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosomal condition.”
Researchers will have a clearinghouse for information and patients willing to participate in clinical trials of new medications.
Spero columnist Leticia Velasquez is a wife and mother to three girls. Christina, her youngest, has Down syndrome. She is the co-founder of Keep Infants with Down Syndrome (KIDS). Leticia blogs about daily life with Christina at Cause of Our Joy, and Causa Nostrae Laetitae is her Culture of Life blog. She reviews books and films at Catholic Media Review. Her articles have been published in Canticle, Faith and Family, and Celebrate Life magazines, and the National Catholic Register.
Targeting Down Syndrome by Regulation by Mark Leach; The Public Discourse