Down and Out: What it Means if Down Syndrome Disappears

Close to four years ago, a close friend of mine gave birth to a child with Down syndrome. It came as a complete shock to her, as well as to all of her family and friends. She had opted out of the traditional first trimester amniocentesis that checked for chromosomal disorders associated with Down syndrome; confident that alternative tests and methods would detect any irregularities. Well, they did not. Although the birth went well, without incident, within a week she and her husband became aware of abnormalities. All of which led to a diagnosis of Down syndrome in her ten-day old child. At the time, it was a collective trauma for her and everyone that loved and cared about her. I particularly remember feeling a deeply profound sense of sadness about the birth of this child. However, once the dust settled it became clear that, despite the bleakness of the diagnosis, she was still a very proud, very committed, and very loving mother to a tremendous and joyful young child.

I, along with many of the friends and family who surrounded my friend, learned a great deal that first year or so about the myths and realities of living with, caring for, and loving a child with Down syndrome (or as my friend likes to say, “it is not who he is, it is one of the many things that he is.”). Talking to her today, the idea of her child being anything less than normal just doesn’t register with her, and she has zero regrets. She even embraces the idea of having another child with Down syndrome.

As current evidence would suggest, my friend is in the ideological minority. Over the past fifteen years the numbers of infants born with Down syndrome (DS) has dropped dramatically due to significant improvements and options with prenatal screenings. The statistics indicate that there has been a 15 percent decrease in DS babies, and research indicates that in the absence of vigilant prenatal testing there would have been a 34 percent increase in DS births, due to the trend of women waiting well into their 30s and 40s to have children. So as early detection becomes more varied and more advanced, the population of DS children begins to incrementally drop because, presumably, a large portion of expectant parents are opting out of seeing these pregnancies to term.

An article published by Brian Skotko, MD MPP, clinical genetics fellow at Children’s Hospital Boston, calls attention to the definitive shift away from voluntarily, or otherwise, bringing DS children into this world. Skotko claims that many physicians and others in a position to counsel pregnant women are ill-equipped to discuss the implications of having a baby with Down syndrome and may, inadvertently or otherwise, steer women toward aborting such pregnancies. Thus spelling the slow demise of a whole component of the population (an estimated 400,000 people in the US have DS), who just so happen to be harboring an extra chromosome.

This development brings forth vexing and troubling questions about the ethics of our genetic futures. Have we entered an era where the myriad of technological and medical advances that offer the luxury of choice also may be cutting us off from the possibilities of a normally wonderful life with an “abnormal” child? I am certain that some will see this simply as a pro-life vs. pro-choice debate, but honestly I think it runs much deeper than that. I am sure those parents who have had the honor of raising a child with DS, will attest to the great love and profound connection that comes with raising a DS child. And those who have little to no experience with DS may be supportive, but furtively shutter at the thought of the imagined burden of a DS child.

Your thoughts?

Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

Emily W.

6:31PM PDT on Jul 14, 2010

I am a volunteer with both children and adults with conditions like these. After working with them I realized that I shouldn't feel sad for them. In fact, I should learn a lesson about hapiness from them. They help you enjoy the little things in life.

In fact, If my child was born with down-syndrome... I'd be ok with it.

send a green star

gerlinde p.

11:45PM PST on Feb 15, 2010

we have a local residential community for ds peoplein our neighbourhood, a lot of them work and seem pretty happy with their lives.

Catherine T.

6:56PM PST on Jan 23, 2010

claudia
the truth is often unpleasant. and specifics are needed in order to clearly present both sides of an argument. i did not divulge his name or location, and his parents are fully aware of his capabilities. my description would not be news to them. they live it every day. and of course, they love him. but that's besides the point.

Claudia L.

1:15PM PST on Jan 23, 2010

Catherine Turley it would be nice if you could reconsider your post. I find it very uncomfortable that you would post details about the problems of someone you are working with here, to make a point, especially as they would be unaware of this and unable to give informed consent

Leia P.

10:07PM PST on Dec 19, 2009

it is a personal choice. i cannot judge these women and their particular situation.

Eric S.

11:42AM PDT on Oct 16, 2009

Thank you to everyone who posted comments on this subject (both sincere and otherwise). I really appreciate the lively discussions that blossom out a simple question.

Many thanks,

Eric Steinman

Mary R.

9:20PM PDT on Oct 12, 2009

Thank You Lety Lopez for sharing you are so blessed.To have your brother.My sister is decease she was down syndrone she was polite and smiled at everyone.This music artist Mark WILLS SONG,DON'T LAUGH AT ME, DON'T CALL ME NAMES,DON'T GET YOUR PLEASURE FROM MY PAIN,In GOD'S EYES WE'RE ALL THE SAME SOMEDAY WE'LL ALL HAVE PERFECT WINGS.Children and Adult Langh and Stared at my sister. stop judging How grateful I was to have my special sister Grace to love for 9 years.God Bless,

11:57AM PDT on Oct 11, 2009

i take care of one young man who sits and stares all day long, despite years of attempting to engage him. he is mute, nearly immobile, cannot feed himself, and wears a diaper. i think we should view ds more like a disease and less like a character trait. if we can genetically fix the problem before it occurs, we owe it to these kids to do it.

Lety L.

9:50AM PDT on Oct 11, 2009

I have a brother with down syndrome, he is 24 and works, in 1985 when he was born the doctor told my mother he was going to be like a vegetable, he would never move, the lack of information was terrible, so imagine when each morning when we saw my brother wake up in another position on his crib we cry of happiness because he moved, then we got a lot of info about it, and yes you have an special child to raise and educate, so since he was 1 month old he was going to school and now he works and we love him more than anything and he gives us every day lessons of life and happiness. One day one person told me that if everyone were with DS, we would never have a war, we always be happy and life would be simple. So why do the DS exist? I personally do not think that is a nature mistake of having one more chromosome, nature is perfect, so the world needs people with DS to teach us about life and enjoy it.

Anne J.

4:17AM PDT on Oct 11, 2009

To those who are annoyed by someone choosing to give birth to a child with DS, please remember that babies can be born with all sorts of things you don't know about til they show up. It's always a crap shoot,and you'd better be ready to love whoever you get. Whatever their personality, physical appearance, health problems, or whatever, you get who you get. Having a child is a way to expand your view of who's valuable; it ought to make you think, "everyone."