ABC: Down syndrome births down in U.S.
November 2nd, 2009‘As more than 90 percent of women carrying a child with DS choose to end pregnancies, parents raising these kids say they’re a ‘gift”
In its coverage of recent research documenting widespread terminations of pregnancies involving Down syndrome, ABC News shifts its focus to the growing concern that women are making their decisions based on misinformation and myths about the disorder.
Author Susan Donaldson James interviews Dr. Brian Skotko, who says research suggests that mothers are getting inaccurate, incomplete and sometimes offensive information. Advocates for people with Down syndrome worry that the decline in births will lead to reduced funding to study the disorder.
Boston filmmaker Melanie McLaughlin had no knowledge of Down syndrome when her daughter Grace was born, but was encouraged after the First Call program of the Massachusetts Down Syndrome Congress introduced her to a family of a five-year-old with the syndrome.
“She played hide and seek, and she kept jumping out, telling us where she was hiding,” McLaughlin said. “She was amazing. I was thinking she would be sitting in a chair unresponsive and drooling. “Actually, she was much like our other children,” McLaughlin said. “We thought, maybe we can go forward.”
A Connecticut woman told ABC News that she terminated her pregnancy after Down syndrome was diagnosed and her doctor “didn’t paint the brightest picture” and didn’t introduce her to anyone with the condition. She said the stress of the experience made her feel that “we were falling apart.”
A Utah mother said she and her husband were given scant support after a Down syndrome diagnosis and wish they had received accurate information and positive feedback. She and her husband decided not to terminate. Their daughter is now thriving in first grade..
“The most important things you can provide are accurate, up-to-date information, and what it’s like to parent a kid with Down syndrome, just to have someone who walks in those same steps to listen and share their own story,” said Sarah Cullen, family support director for First Call, which takes no position on whether to terminate pregnancies.
At last count, the story had drawn more than 170 comments. Many of the commenters are arguing about abortion rights, while others say the author should have done more to explore the lives of adults with Down syndrome, and did not adequately take into account the shared public cost of their ongoing care. Yet another said the real tragedy here is a society in which caring for people with disabilities is widely perceived as impossibly burdensome, and the health care system cannot be counted upon.
(Photo from ABC News)
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November 9th, 2009 at 9:30 pm
Thanks Scott, I will just stay out of this kind of thing….
My wife, daughter and I are caregivers for a lady with DS who has lived with us for 8 years now. It works well for her and our family and we will continue to do so for many years we hope. All the best – BloOpus signing out
November 8th, 2009 at 11:40 pm
Opus, So I got your attention…. now think about how you scream the fact that you took someone into “MY HOME and have for years”….. if you open your home doesn’t it become the person with Ds’s home too? I’m just sayin……
November 8th, 2009 at 10:36 pm
Whew! One down how many more close minded people to go…..
November 8th, 2009 at 8:33 pm
Let’s not be too hard on Mr./Mrs. BloOpus (and I’m not just saying that because he/she “totally agreed” with my previous post.
It’s hard to get your point across on a keyboard and I’ve certainly disagreed with some of his/her posts in the past.
However, BloOpus is responsible for caring for an individual with Ds who I assume isn’t his child.
For that, I admire BloOpus.
November 8th, 2009 at 12:08 pm
Rachel- “I would suggest you spend some time creatively with the person with Ds you care for and get to know them as a person first. ”
You actually said that ? No wonder we’re not communicating here. I’m the one that took someone into MY HOME and have for years.
Fine, I’m done. Go on as you were…..
November 8th, 2009 at 11:16 am
If we follow this argument out logically, no one who excels at anything and no celebrity should ever be shown anywhere because MOST people will not do what the ‘excellers’ have done… Very few of us can be rock stars, sports stars, president, etc, etc, etc… so none of this should be shown in the media at all.
Clearly that isn’t the way it works for people without disabilities… celebrities, stellar performers and leaders fill the media and the world is comfortable with that.
Why the different standard for people with disabilities?
November 8th, 2009 at 10:06 am
It is kind of sad we have to “wave the superstars around” but the old way of educating people on Down syndrome is still out there. We still have websites that portray individuals with Ds as angels or portray all individuals with Ds as interested in the same things.
We have to “wave” to change thoughts within our own organizations. Many of our parent organizations have resisted change – they are run by parents of older individuals with Ds who aren’t ready to accept the change.
But things have changed. The outlook is more positive. The resources are better, the life span and quality of life is better for all of us – Ds or not. Let’s wave and say YEAH! Let’s wave and show that people with Ds are individuals. We all are. Let’s start within and change our attitudes. Let’s all work together. Together is better. The less time spent changing attitudes within our own organizations the more time can be spent on educating the general public. Let’s stop resisting the greatness and expect it!
November 8th, 2009 at 9:41 am
So is this the main concern?
“I’m sorry that I’m not getting this across or out properly at all. I DO NOT want to see any children aborted, NOT ONE. I’m wondering what the plan is for all these kids. We ain’t got no plan. WE don’t do it well right now and it looks like the numbers are just going to increase. That’s my concern.”
If this is the real concern then why not find a way to support your concerns. I think we all get frustrated at the system and feel it isn’t treating us fairly. But maybe you aren’t expressing your concerns effectively thus you aren’t getting what you need or feel you deserve. I think that many things are being done well but I also am putting in my share – the resources are there but it is up to us to individualize the resources to the benefit of the individual.
“These Kids” grow up and become adults just like all kids do. Most people don’t have a plan for their children – we wait to see what plan they are interested in. Then we hope to maximize the potential of that child into adulthood giving them the tools and resources needed to follow that plan. I suggest you look more individually at each person and what they have to offer. The only common denominator of people with Ds is the diagnosis of Ds – that is it – each person is an individual with individual interests. We should stop generalizing and start getting creative. I would suggest you spend some time creatively with the person with Ds you care for and get to know them as a person first. Love is the answer and there is enough for every resource – human or expendable. The two should not be lumped together.
November 8th, 2009 at 12:10 am
Scott – I’m in total agreement with you, and yes I’m Bloop, Bloop only had half of his posts go through.
I’m sorry that I’m not getting this across or out properly at all. I DO NOT want to see any children aborted, NOT ONE. I’m wondering what the plan is for all these kids. We ain’t got no plan. WE don’t do it well right now and it looks like the numbers are just going to increase. That’s my concern.
Mandy – “rather than sitting in judgement on people with Down Syndrome, try to ensure your own life is useful.”
I am a caregiver for some one with DS and have been for many years.
November 7th, 2009 at 8:44 pm
At my prenatal diagnosis, my doctor held a blank expressionless look. He offered no info negative or positive. No pressure to continue our pregnancy nor pressure to terminate. They treated me like any other patient on their case load. I was considered one of their high risk patients and as a matter of routine my care was discussed weekly at their “high risk patients” meeting. Neither he nor his 4 associates ever mentioned DS to me again for the rest of our pregnancy. What they discussed outside of my presence is unknown.
November 7th, 2009 at 12:51 pm
Opus, you sound a lot like Bloop.
Since you’re a self-procaimed “thinker,” here’s a thought.
What if we accepted, loved, treated and taught individuals with Down syndrome in the same manner we do their typical peers.
I’d bet that you and many others would be surprised at the results.
Most older folks with Down syndrome are products of the society they were raised in – no interaction, no education, no respect.
Had they enjoyed the benefits of today’s Early Intervention programs and inclusive education, I’m sure they would’ve “surprised” you, too.
As for your birth-control theory, that should take place prior to conception – not after.
November 7th, 2009 at 10:44 am
Laure – Thanks
Heather – I wasn’t saying that “physicians et al. are “not painting the brightest picture” is actually a giant understatement. ” I was saying that advocates overplay the successes. Because I live with someone with DS, I get tired of the waving the superstars around like they are the new normal for DS.
As for “I would like to know how you believe that this is different from eugenics–which was so widely denounced when it was official policy, yet is clearly happening all over again.”
I never said what I believed. First we have experianced many DS dying as infants with heart defects, then they were given medical attetion and the population has increased, except for the abortion effects. Now we are dealing with the hunt and destroy technology.
I am not pro abortion, I am not for eugenics ( such a knee jerk work ) or even suggestion we ‘eliminate’ anyone. I do think over all we should stop having litters of babies, that even thinks out for everyone.
I am saying, what are we going to with a potential 340,000 per year population of people with DS ? ( perhaps a lower birth is an answer )
November 7th, 2009 at 10:08 am
Opus, these people haven’t been putting “a positive spin” on it; they have been trying to make you and others see the reality of someone with Down syndrome. People with Down syndrome lead good lives, but the erroneous picture often painted is a grim one. You didn’t say it’s ok to abort, but you certainly seem to be making the argument for people doing it as you have pointed out several times that you don’t know what we’d do with that many people with Down syndrome (obviously birth control wouldn’t help as many people try to get pregnant and then terminate when they get a prenatal diagnosis). You seem to be saying that if people didn’t abort, there would be too many people with Down syndrome in the U.S. and they would strain our resources. If that’s not a cost/benefit argument against having a child with Down syndrome, I don’t know what is.
Finally, what do you mean what’s the “answer”? With regard to whether a pregnancy should be terminated when Down syndrome (or any other condition or malady) is detected, there are only two possibilities from which to choose: (1) either do not abort when it’s learned a child has Down syndrome, or (2) do abort when it’s learned a child has Down syndrome. My opinion is do not abort. I know many individuals with Down syndrome and I think the world is a better place because of them. I think that people should know the reality of a person with Down syndrome and not be given only one side of the story by doctors. Also, I don’t think there will be so many people with Down syndrome that vital resources will be taken away from you “normal” people. And, they deserve resources just as whatever problem you have deserves resources.
November 7th, 2009 at 5:56 am
Opus, I’ll tell you a story about judging the value of other people’s lives based on their IQs. Our daughter has Down Syndrome. She is an intelligent, useful member of society, a happy person who invests her life – and the lives of those around her – with meaning.
I have an older sister, a Phi Beta Kappa, who finished Law School at the top of her class 30 years ago. She was not only brilliant, she was gorgeous, too. Really, a superior specimen. She married an Alpha male, had two gorgeous children and then began over-indulging her fondness for alcohol and recreational drugs. For the past 25 years she has lived the life of desperation of a substance-abuser. She hasn’t held down a job in 20 years. Has been in and out of rehab dozens of times. She lost her husband, her children. She is a source of embarrassment, shame and anxiety for her entourage. Why was she born? She has brought nothing but misery in her wake.
Opus, rather than sitting in judgement on people with Down Syndrome, try to ensure your own life is useful. Is it? You too are using up the planet’s finite resources. Your contributions on this forum are only intended to bring misery in their wake – a bit like my sister. Could YOU justify your existence?
November 6th, 2009 at 3:20 pm
Well said Laurie.
People that think it’s ok to eliminate that Down syndrome population should be careful what they wish for.
What “imperfection” will be next? Eventually, yours may be at the top of the list.
November 6th, 2009 at 1:22 pm
My experience is that most ( as in 90% or more ) of people with Down Syndrome will not be exceptional or typical population norma. Most will not drive cars, not live on their own, not have degrees, despite the rah rah crowd. – sorry just a personal rant as I think the the put a positive spin on it crowd are very much overplaying their case.
As for “how severe does it need to be for you to make the call of “ok to abort” on the cost/benefit basis?”
That is not what I was saying, that is what you thought I was saying. I will say the say the same thing again – there is so much talk about the high rate DS loss, have has anyone put a thought as to what we’d do with that many people with DS ?
“Incidence extrapolations for USA for Down Syndrome: 340,000 per year, 28,333 per month, 6,538 per week, 931 per day, 38 per hour, 0 per minute, 0 per second. [Source statistic for calculation: “1-in-800 overall births”
That’s lot of people. I’m not pro-abortion, ( I am pro-birth control ) and I am pro- thought. I don’t have an answer, but it seems no one else does either.
November 6th, 2009 at 12:28 pm
EB: Agreed. A pox on all the warriors.
Opus: Saying that physicians et al. are “not painting the brightest picture” is actually a giant understatement. I do not know one mother of a child with Down syndrome who has had prenatal screening and was not outright told to have an abortion (and trust me, I know a lot of mothers of children with Down syndrome!). Additionally, among those parents who refused screening, they were pressured to have it so that they could “avoid problems” like having a child with Down syndrome. I would like to know how you believe that this is different from eugenics–which was so widely denounced when it was official policy, yet is clearly happening all over again.
Laurie: What you said.
November 6th, 2009 at 11:13 am
I just wanted to say that in my last comment, in the first sentence of second paragraph, I should have said “one” instead of “you”. I was not calling Opus a Nazi and I apologize if it seemed I was.
November 5th, 2009 at 5:50 pm
Opus, at what disability do you draw the line? Is severe asthma a bad enough disability to warrant not allowing the child to live? What about if you found out there was a possibility of leukemia? How about a learning disability and if so, how severe does it need to be for you to make the call of “ok to abort” on the cost/benefit basis?
Whenever you start measuring humans on a cost/ benefit basis, I think you are as close to a Nazi as one can get. Who made you or anyone else the arbiter of who gets to live?
And by the way, Down syndrome individuals are just like everyone else – some are leading happy lives and some are not, some are “exceptional”, some are average and some are not. The point people are trying to make, Opus, is that there is value to a person with Down syndrome’s life, just as there is value to a “typical” person’s life. No, everyone is not exceptional – typical or with Down syndrome. Is it ok to dispense with anyone who isn’t deemed “exceptional” (and by the way, who, again, makes that call)?
November 3rd, 2009 at 9:42 am
I don’t know, the ‘brightest picture’ isn’t all of the picture. I’m getting tired of the Down Syndrome version 2.0 – everyone is not exceptional, despite what the advocates claim.
Disability is natural, but so is many not surviving. Can we really imagine what we’d do with that possible 90% if not aborted ? I’m not pro-abortion, but I’m wondering what the world would do with those 90% more.
We live on a planet, not an unlimited source of resources. Societies’ view on things change, but base reality of resource limits will always be there, regardless of what we think.
November 2nd, 2009 at 5:31 pm
The abortion wars are swamping rational discussions of the pros and cons of having a child with a disability. A pox on all the warriors.