Will The Down syndrome Children Disappear?
This is the incredibly provocative question asked by a Children's Hospital Boston researcher in a recent article published in Archives of Disease in Childhood.
Given the new prenatal tests available to mothers, the author, Brian Skotko, asks, are we entering an era where slowly Down Syndrome babies will begin to be born in dwindling numbers? And is this, he asks something that we as a society would even want to happen?
As covered in the Washington Post, Skotko provides some interesting data: "in the USA, there would have been a 34% increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15% fewer babies born [with DS], representing a 49% decrease between the expected and observed rates."
This difference between what is expected and observed is not likely to change, but only increase when some 92% of women who know their fetus has Down syndrome choose abortion. And as testing becomes more sophisticated and more reliable, this number may increase as more women know even sooner and may choose this option given more time to choose it.
But what will our society lose if all the Down syndrome children disappear? There will certainly be a thread of our humanity that would be lost. Moreover, I doubt that there will ever be a time when Down syndrome is ever completely gone from our population. 100% of women will never terminate their Down syndrome pregnancies--nor should they. Their is a richness and fullness that raising a handicapped child brings to parents' lives and for some parents that is what they wish to have.
So will the Down syndrome children disappear? No. But will they dwindle in number? Yes, due to advances in prenatal screening and genetics and parental choice. And yes, we will lose something for having fewer Down syndrome children and adults among us.
Summer Johnson, PhD
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And when there are fewer people with Down Syndrome, will they find themselves more marginalized in society and less able to find support? And with less support available, what impact will that have on the decisions of families to give birth to children with DS?
- by Deacon Sean Smith on Sep 16, 2009 at 2:13 PM | link
What? Some parents get personal fulfillment from raising handicapped children, so it's good that some children are born with serious developmental disabilities that will affect their entire lives? If that were really what happened, I'd say those were pretty selfish parents! I think you are mischaracterizing what is actually parents making the best of a difficult situation.
I find Deacon Smith's comment troubling as well. This is an argument against fixing cleft palates and club feet. We shouldn't stick people with disabilities just because if there are too few disabled people, they'll feel too left out. The solution isn't to have lots and lots of Down syndrome children. It's to make sure that disabled people aren't marginalized, regardless of how many people share their disability.
- by thoughtcounts Z on Sep 17, 2009 at 1:47 PM | link
So much to be said. So little time and space. I am jaded because I have a 10 year old daughter with Down syndrome. I had a prenatal diagnose. I had a wonderful doctor. I chose to keep my baby because every reason we came up with for not having her was selfish. Ten years later it was the right decision not just for my family but for the world. Her teachers say we learn more from her than she does from us. One said she was her most memorable student (after 20 years of teaching) and for good reasons. Our children's minister said that the other children learn more from her than she does from them. I have watched her melt some of the most sinister people in the world who view terminating babies with Down syndrome differently because they know my daughter. I do not wish to interfere with a woman's right to chose. But the playing field is not level. The media still portrays people with disabilities in a poor light. The public still has to be coaxed to include those with cognitive disabilities. Doctors still say things like "your amnio shows your daughter has Downs. Come in Mon. to schedule your termination." Our ethical decisions really are not different than those of Hitler who wanted to rid society of ..... The world is a better place because there are people with Down syndrome here. Not just because we are the parents but just because. That's not even to mention the scientific break through that individuals with Down syndrome are helping to conquer. Just one mom's thoughts.
- by jaws on Sep 17, 2009 at 7:47 PM | link
I'm shocked! There is nothing to gain from having people born disabled. Where you see richness and fullness, I see cruelty and selfishness. Nobody has the right to create a life to serve their own at the expense of the others. Which is exactly what you're proposing when you say "Their is a richness and fullness that raising a handicapped child brings to parents' lives and for some parents that is what they wish to have." What humanity has yet to gain is the ability to make sure nobody suffers any kind of disability.
- by Louis Burke on Sep 18, 2009 at 4:12 AM | link
Whether you think selective abortion is okay mostly depends on whether you think abortion is okay. If a fetus is not a person, then it's acceptable to say, "This fetus will eventually become a person who faces life with extreme disadvantages, so let's abort this one and try again." If a fetus is a person, then such a response would be morally reprehensible, but no more so than in the case without disability. (Arguably, it could be less so, if you believe that assisted suicide is acceptable.) I don't mean to open that can of worms.
However, the way that Dr. Johnson and commenter "jaws" are talking about the situation is scary to me. If it is really so great for parents and for society as a whole to have children with Down syndrome, do you think it would be okay for us to cause it in children otherwise born without it? (Assuming we had the technology, as sci-fi as it sounds. I mean hypothetically.) After all, "the world is a better place" and we all benefit from "the scientific [breakthroughs] that individuals with Down syndrome are helping to conquer." If the population of people with Down syndrome dropped too low (by your standards), would you want us to cause more people to have it, lest "we lose something"?
If so, that's disgusting, and I'd appreciate you save your analogies to Hitler for a time when you're not defending harming others for your personal happiness or for their usefulness to society. If not, then why do you talk at length about how beneficial you find another person's misfortune?
- by thoughtcounts Z on Sep 18, 2009 at 1:15 PM | link
"What humanity has yet to gain is the ability to make sure nobody suffers any kind of disability."
And so will you start advocating killing people who have an accident and become disabled, or get meningitis and become severely impaired?
- by November on Sep 18, 2009 at 1:40 PM | link
I too have a child with Down Syndrome and we chose to have him with prenatal knowledge. It was a very hard decision but one I do not regret. I now feel that he was brought into this world not just to change me and my family but to touch and perhaps change many. Its not just teachers and therapists that he affects but I see friends of my daughter, his sister, in junior high. I see him melt their so cool facade and show such patience and care and joy just interacting with him. Yes, if these people are marginalized it will negatively affect our society.
- by Mari on Sep 19, 2009 at 9:05 AM | link
@November
"And so will you start advocating killing people who have an accident and become disabled, or get meningitis and become severely impaired?"
What a gross misunderstanding of what I'm actually advocating. Do you honestly believe I advocate killing people? Are you mad? If someone becomes disabled in an accident what humanity lacks right now as I type, is the ability to successfully rehabilitate them to their original faculties. If I were paralysed for example what I would expect from other's is determination to fix my nervous system, unfortunately we haven't that capability which is wrong. We should be trying to improve the human condition at all times not making the best of it as it stands because lets be honest is not what it could be.
- by Louis Burke on Sep 24, 2009 at 6:25 AM | link
I have never believed in abortion and when I found out I was having a child with down syndrome, abortion never crossed my mind. Thank God!! I am grateful everyday for the gift of his life. So also are his five brothers and sisters, their many friends, his teachers and our extended family. Is he suffering or our we because he lived. He suffers no more than my other children did during the difficult middle school years. Has he caused us suffering. No unless we see society treat him poorly or read blogs like some of the ones above. Only then is the strength of our character tested. I see my child with type one diabetes as having a more difficult life than our child with down syndrome. Is her life not worth living? Who is to say what the optimal human condition is? Perhaps a healthy "normal person" suffers more emotional anguish than any person with down syndrome ever will. Should they end their life? In the event there exists and all loving creator, and in the event He did come to the world to witness to the weak and the poor, the lepars and the sick, we might be wise to believe all human life has value and worth and should be cared for in the most humane and loving manner. It would be most sad for humanity to find out too late, that we all are created in the image and likeness of a loving God.
- by Jane Medrzycki on Oct 11, 2009 at 7:10 PM | link
I had ultra sounds that told me my daughter would probably be born with downs. I was amazed how quickly i was asked if i wanted to abort the pegnancy. Everyone looks at downs syndrom as if you were just told the worse possible news. Yes, there are higher risks for certain things with downs. And yes they do look alittle different. And maybe theyre IQ isnt tops. But i can tell everyone this.If we start saying that looks,IQ and possible higher risks for health issues is a reason to kill a fetus. There are alot of people( normal People )that should not have been allowed to be around in our socieity.
- by kelly on Dec 5, 2009 at 11:42 AM | link
You people really dissapoint me. My twelve year old sister is Mosiac, its a form of downsyndrome. She is bright, beautiful, extremely hard-headed(just like her older sister) and last but not least loving. Sure she still carries baby dolls around and out to eat. Her actions mimic those of a 6 or 7 year old, BUT she reads on level with her 5th grade class. She is smarter then alot of the kids in her grade. Ofcourse her life is going to be more difficult, because of the harshness of some of the people in this world. All I can do is help her be the best she can be. I know she affects many with her outgoing personality. She is truly an angel. She is my little sister, God put her in my life for a reason. God wants to bless others with kids like her. Will you let him? Or are you going to just make it easier on yourself?
- by abbie on Feb 26, 2010 at 10:42 AM | link