Down Syndrome Awareness Month

If you own a television, use the Internet, or shop at just about any kind of retailer – from grocery stores to Saks Fifth Avenue – you’re probably aware that October is Breast Cancer Awareness Month. Receiving less attention is the fact that it is also Down Syndrome Awareness Month.  “Awareness” of Down Syndrome – specifically, of the daily realities and experiences of those living with the disorder and their families – might just mean the difference between life and death, argues Mark W. Leach at the Public Discourse.

Leach points to several recent studies focusing on the lives of those with DS and their families. The picture that emerges is more positive than many might expect, says Leach:

Ninety-nine percent of parents said they loved their child with DS and 97 percent were proud of them; only 4 percent regretted having their child. While 4 percent of siblings would “trade their sibling” with DS, 96 percent indicated that they had affection toward their sibling with DS, with 94 percent of older siblings expressing feelings of pride. Finally, although 4 percent of individuals with DS expressed sadness about their lives, 99 percent said they were happy with their lives and 97 percent liked who they are.

Leach argues not only that these facts counter the bleak images often presented to parents who receive a prenatal diagnosis of DS, but that sharing information about the realities of DS – including the positive elements reported by overwhelming numbers of DS individuals and their families – may help persuade women leaning toward aborting their disabled children to instead choose life.

The most influential information an expectant mother receives is from her physician and from written resources. … Ignorance and prejudice persist, however: over 80 percent of medical students are not trained in working with individuals with intellectual disabilities, and almost 60 percent of medical school deans do not believe they should be. Further, while most physicians now offer prenatal testing to all expectant mothers, less than a third provide them with educational materials.

…This is precisely why providing information about these new studies is so important, for most expectant parents and their physicians will not otherwise have or understand the positive experience of getting to know a person with DS.

The further significance of the new research is that it addresses the concerns of mothers who have aborted following a prenatal diagnosis. These mothers were concerned that the condition would be an excessive burden on them and their other children, and that DS may be too much of a burden for the child him- or herself. The three new studies directly counter these concerns and more, as they reveal a truth not often considered: a child with DS will almost always be a positive force in the lives of his or her parents and siblings. The studies found that 79 percent of parents felt that their outlook on life was more positive because of their child with DS. For siblings, the response was even greater, with 88 percent feeling that they were better people because of their siblings with DS.

While new, non-invasive prenatal tests for DS emerge, bringing with them the possibility of even higher abortion rates for DS babies – already at a staggering 92 percent – work is being done for the first time ever on medicines aimed at improving cognitive function in individuals with DS, reports Leticia Velasquez at the National Catholic Register:

The first clinical trials for medications to improve learning, speech and memory in those with Down syndrome this past year have garnered amazing results, according to the Genetique Press Review. In Barcelona, Mara Dierssen successfully carried out a pre-clinical trial with a molecule derived from green tea on 10 adult patients. She is now preparing a clinical trial on 100 patients. Dr. Alberto Costa conducted a clinical trial with the Alzheimer’s drug memantine, with dramatic cognitive improvements noted by the patients’ parents, as reported in The New York Times Magazine. Dr. William Mobley, a noted Down syndrome researcher at the University of California-San Diego, says in the article, “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.” According to Mobley, a drug which makes the learning and memory of those with Down syndrome completely normal will be developed within a decade.

Studies on the positive impact of those with DS and reports about promising scientific research can be sources of hope and consolation for those parents facing a frightening prenatal diagnosis; rounding out the picture are concrete reminders that every life – including that of a baby with physical imperfections or mental disabilities – is a miracle and a gift. I was pleased to see one such reminder in a Pampers ad, of all places, which ran in a recent issue of Real Simple Family. The image quality here isn’t great, but the text of the ad reads, “Because every little miracle deserves our best protection,” and it includes a picture of a little girl with DS. One mommy blogger, whose daughter has DS, wrote about the ad, “My heart was so happy to see that Pampers had included a baby with Down Syndrome in their ads.  It means inclusion to me….it means that they think babies with Down Syndrome are special and valued enough to plaster all over their ads that millions of people see.  It means they value my girl. … Yes, [babies with DS] are miracles and yes, they deserve unconditional love….just like any other baby in the world.”