Wednesday, April 15, 2009

Boston Globe Magazine

A couple of months ago, there was an article about Down syndrome in the Sunday edition of the Boston Globe Magazine. The article was primarily about the choices families are faced with as a result of prenatal testing. Two families in the article received prenatal Down syndrome diagnoses - one family had their baby and the other aborted. Since reading this article, I haven't been able to get this one sentence out of my mind: "Women and their partners use (prenatal) testing so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges, or so that they can end the pregnancy." I re-read that sentence several times and became more upset each time I read it. Profound medical, cognitive and behavioral challenges???? There are so many things wrong with this statement. The only part that is accurate is that of cognitive challenges.....yes, all children with Down syndrome will have some degree of intellectual impairment. Otherwise, there is nothing that ALL people with Down syndrome will have. Some will have health challenges, some will not. Some will have behavioral challenges, some will not.

While I was reading this article, I thought about the thousands of people without any personal knowledge of Down syndrome who, after reading this article, would define people with Down syndrome as having "profound medical, cognitive and behavioral challenges." What is also disturbing is that the Doctor who wrote this article is an Obstetrician....an Obstetrician who works specifically with "complex pregnancies including those with Down syndrome." He says he tries "to be informative, supportive, and non-directive" with his patients as they make their decision whether to continue or terminate their pregnancies. Based on this article, I find that impossible to believe. Indeed, there is much work to be done to educate people, especially those in the medical profession, on the facts about Down syndrome.

Beverly Beckham, grandmother extraordinaire, describes her reaction to the article here and echoes my thoughts and feelings completely.

6 comments:

Hector and Jennifer Varanini Sanchez said...

What an insult that article is and BRAVO to the Grandma!!! We have got to change the world...too many misconceptions!!!

Laurie said...

oh my gosh, sharon! i didnt see that article and you know what? im kind of glad i didnt. reading that was so...discouraging.

i absolutely LOVE the grandma's response. she is SO right!

i wish so badly that more people could know what Ds is REALLY like...

Adrienne said...

It really is too bad that people will read this article and have a perception of what it is like to raise a child with DS. When we found out at 17 weeks we were devasted and termination crossed my mind for a brief second but my beliefs kept me from doing it but I was still so upset and thought our lives were over and that's because I had no knowledge of DS and had perceptions. I don't know what it will take to change people's minds about DS and to lower the termination rate.

Anne and Whitney: Up, Down and All Around said...

it makes my heart hurt to think of how people in the medical community refer to babies/children/people with Down syndrome when it is completely off base and those with no knowledge or experience of having a child with Down syndrome are basing decisions from what "medical professionals" are presenting!!!

mrs. mary mack said...

Thank you posting this, and having this blog. I will be going through your history (not to creep you out or anything). I am a first time mom who's baby was just diagnosed with a soft marker for DS I'm trying to prepare as much as possible for the "just in case". Thanks again!

Jessica said...

I'd like to add that even the cognitive challenges are not necessarily a given with Down syndrome. My son will be 4 in a couple months and he does not now and has never tested as having mental retardation (which my state defines as a 25% delay in skills). Maybe that will change as he gets older and the subject matter becomes more difficult but for now, his cognitive skills are on track with his typical peers. So pretty much nothing that doctor characterized in the article is accurate.