http://www.care2.com/greenliving/down-and-out-what-it-means-if-down-syndrome-disappears.html
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?
Robyn
Melissa
Deepak
Eric
Dave
Dr. Brent
Isha
Susan
Delia
Michelle
Wendy
Megan
Hilary
Ann
Judi
Ronnie
Kelly
Lily
Terri
Betsy
Cait
Andrew
Jana
Annie B.
Veronica
49 comments
add your comment »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
send green star | flag as inappropriate
why is this inappropriate?
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,
send green star | flag as inappropriate
why is this inappropriate?
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.
send green star | flag as inappropriate
why is this inappropriate?
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.
send green star | flag as inappropriate
why is this inappropriate?
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."
send green star | flag as inappropriate
why is this inappropriate?
Perhaps our societies could do with more education & helpful positive resources on this topic. I feel many people are afraid of raising a child with disabilities because of a lack of accessible positive information & support services. It seems many people freak out over being presented with an 'abnormal' child. Perhaps with proper planning and resources, we can turn this situation from being a disaster, to an amazing opportunity.
The choice may be yours.
send green star | flag as inappropriate
why is this inappropriate?
Thankyou Bernadette for such a beautiful story, and Thankyou Eric for Posting this article, which raises many valid discussion points.
It's true children with Downsyndrome are different, but they can truly be a blessing in disguise, depending how you choose to look at it.
And how much your willing to exercise the practice of unconditional love.
send green star | flag as inappropriate
why is this inappropriate?
Ellene J.-I hope your comment is a joke! If not, you are one of the most close-minded, heartless people I have ever encountered. How dare you suggest that a person with special needs is not worthy of living a life like the one we have? How dare you comment about society "paying" for their problems as a problem of our own. Believe me, our tax dollars go to far worse causes. EVERY life one that is "worthy" of living. It is not up to us to make that judgment. I am absolutely appalled by your post. This is the first time I've ever actually responded to one of these, I just couldn't be quiet about such an insulting, offensive comment. I pray that a person with special needs comes into your life one day, and shows you that just because they are "different" does not mean that their life is any less worthy than your own. I pray that you will see that our world is a beautiful place precisely because of the many diversities that surround us.
send green star | flag as inappropriate
why is this inappropriate?
I beg to differ. Aborting a fetus with abnormalities has absolutely nothing to do with predjudice. It has to do with financial, mental and emotional resources. I believe it is a totally unselfish act to terminate when the person knows they do not have the resources to provide for their potential child.
send green star | flag as inappropriate
why is this inappropriate?
According to this article, Downs Syndrome is not disappearing, but fetuses diagnosed with the anomaly are being aborted. How can your title indicate that Downs is going away? Should women not have the option of safe pregnancy termination, there would most likely be a rise in babies born with DS.
send green star | flag as inappropriate
why is this inappropriate?
Facebook account: