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March 04, 2008

Comments

dangermom

What a lovely video. I also fear that there will be almost no Down's Syndrome children in the future. I have a hard time writing rationally on the issue, but I would like to let interested MZ readers know about another effort in the other direction: Gifts, a book of essays by mothers who write about the joy they have in their children with DS.

The author wrote: "[My son] is about to turn two. He’s taking his first steps and speaking his first words. The fact that he has Down syndrome does not in any way lessen the delight of his childhood. If anything, our family’s pleasure in his company is heightened by his diagnosis, thanks to the many ways his presence has opened our minds and hearts. We are the ones who are lucky.

I didn’t know that from the start. And that’s why I compiled GIFTS, a collection of 63 personal essays written by moms of kids with Down syndrome, each describing the gifts of respect, strength, delight, perspective, and love which their child has brought into their families. The purpose of the book is to illustrate why the life of a child with Down syndrome is something to celebrate.

This is a message desperately needed in our society. ...In the USA, 90% of fetuses with Down syndrome are aborted. I drew attention to the current clinical climate surrounding a diagnosis of Down syndrome, and asserted that the unbalanced information given to patients by their doctors might contribute to the alarming abortion rate. Medical professionals do a great job educating parents about what might go wrong if they welcome a child with Down syndrome into their family. My lament: If only parents could know what might go right. If only every parent facing a diagnosis of Down syndrome could read supportive, candid, hopeful stories like those in GIFTS."

M.

This video is so true... My older sister has Down Syndrome, so I have spent my whole life around the condition. People with DS are some of the sweetest, happiest people you could ever hope to meet. (Not that I am biased! ;-) )

People seem to be so afraid of having a child that isn't perfect. They seem to forget that no one is perfect. People with disabilities just have more obvious imperfections. Children with DS certainly present extra challenges, but also extra joys, such as unconditional love for their friends and families and the ability to savour every moment. I can certainly say that my life is fuller and more meaningful because my sister is a part of it.

DS also fits into the idea of modesty in that people with DS have an uncanny ability for seeing people as they are, without caring for the externals. Ultimately, isn't that what all the standards of dress and behaviour try to achieve -- the ability to be seen as the person you are inside? In that regard, those with DS are ahead of the rest of us and we all have much to learn from them.

I hope many people see this video, as the DS population brings so much to the community at large. It is a sorry state of affairs when someone's worth as a human being is determined by his contribution to the bottom line.

Jenny

For the record, I hope eventually that sometime in the future "there will be no people with Down syndrome." It would be great if the extra chromosome problem actually could be corrected.

Tom Babcock

This reminds me of a program I saw on PBS several years ago, a program that originated in Britain. The topic was "spina bifida" and the same prenatal tests that are done to detect Downs Syndrome (The test also can be a warning to look for spina bifida or other neural tube defects). One segment was an interview with a girl confined to a wheel chair because of the spina bifida. She was asked about he thoughts on the prenatal testing. Her reply was heart rending primarily because of her perspective. Had her mother had the opportunity to have the test, her mother might have opted for abortion, and then she would not be here. It is one thing to judge a quality of life from an outside perspective, but from her point of view, this was the life she was dealt, and she was grateful to be able to live it. When we think of aborting a "fetus", I'd rather say "child", with downs syndrome or another handicap, we are doing just what that girl said--taking away any chance the child has to live and enjoy the life God gives them.

I suppose I am a hard-liner when it comes to abortion. I do not see the reason for a rape/incest exemption either--it is the innocent life that never gets to live, and the mother has available counseling and other services to help deal with her situation. The baby receives no other services.

Ken

Back in the Eighties, we used to call having an amniocentisis/prenatal test "Doing a Search-and-Destroy"...

Michael L

Thanks. I have a 9 year old daughter with Down syndrome. She is an absolute delight and I cannot imagine life without her!

dangermom

"For the record, I hope eventually that sometime in the future "there will be no people with Down syndrome." It would be great if the extra chromosome problem actually could be corrected."

I'm not sure how that would be possible as long as people get pregnant the old-fashioned way. How do you remove a chromosome from a developing fetus? How do you add one on (in cases where a missing chromosome is the problem)?

Either way, I don't see that happening in the future if Down's Syndrome becomes practically unknown because parents abort their DS babies. The rarer something is, the more it is seen as a terrible aberration rather than a livable condition.

I think that most parents who do this do it out of fear. It must be terrifying to realize that your hoped-for child is going to have a condition that will probably require lifetime care. People don't know how they will cope, doctors frequently encourage abortion as a solution (indeed, I've heard that it's being treated as routine and doctors are surprised and dismayed when parents insist on not aborting), and it's easy to rationalize it by saying that it's kinder to have an abortion than to subject a person to such a thing.

I can understand it, but it's deplorable. The rationalization is IMO terrible; it's trying to make a selfish decision sound noble and unselfish. And it's ridiculous, when people with DS are well-known to have generally loving, joyful dispositions.

I find it bizarre and terrible that, because of countless individual decisions to avoid the difficulties (and joys) of raising a child with DS, there are almost none left. It's as if our society has decided that handicapped people don't deserve to live and shouldn't be allowed to exist. What kind of society is that?

Laura

Well said, dangermom.

I can understand why people do it, but I still think it is a selfish decision. It is indeed almost like saying that the DS people who are living should never have been born.

Some of the first people (besides the Jews) to be killed in the Holocaust were handicapped people, because Hitler did not see them as "perfect". The reason why so many women abort DS babies is because their child will not be "normal" (this the word they use, but they are most likely thinking "perfect") and will need more care and work than they want to give it, which will mean more sacrifices on their part. Isn't sacrifice and selflessness what motherhood is about though?

M.

Dangermom hit the nail on the head. Fear has a lot to do with decisions surrounding DS. Doctors paint a horrible picture of life with a DS child. To this day my parents talk about the doctor's predictions when my sister was born-- none of them came true, but it scared my parents silly.

Parents also receive a lot of pressure from family and friends to abort a DS baby. It is just considered socially unacceptable to continue with the pregnancy... And heaven forbid you have another child later. There is no doubt that this culture of fear contributes to the high abortion rate.

L.B.

When I was born in the '80s, my parents refused amnio, since there were no conditions that would have led them to abort me.

Amelia

When my cousin's baby was born with Down's Syndrome (and she was only 32 years old) I told a co-worker about how sad it was.

She told me: "My family is from Mexico and where we are from, the families are very large. Sometimes 11 or 12 children. And b/c of poor medical care and nutrition, there is almost always one baby born with a serious problem. And the parent's reaction is: what a blessing! This child will always be my baby! All the others will grow up and leave me, but this child will always need me!"

Her comments transformed my way of thinking. Parents are blessed by every child - and a child who will remain forever dependant can still bring intense joy and light to the lives of the other family members.

I never had ammnio for any of my 5 children - even when I had the last one at age 40, and my doctors (at a Catholic hospital) were extremely supportive of my decision to refuse ammnio.

dangermom

Actually, I'm not at all against doing an amnio. I had one myself. We lost our first baby to a genetic defect at about 13 weeks, and when I got pregnant again I had the test done. I wanted to stop worrying if everything was OK, and if it wasn't, I wanted to know and be prepared. I figured the stress I was putting myself through was probably worse than the risk. It all turned out fine, but if our daughter had had a problem, we wouldn't have considered abortion.

I think there are valid reasons to do an amnio.

A Man


Uhhh, Tom? So on one hand

"It is one thing to judge a quality of life from an outside perspective, but from her
point of view, this was the life she was dealt, and she was grateful to be able to live it."

but on the other

"I do not see the reason for a rape/incest exemption either ... the mother has available
counseling and other services to help deal with her situation."

Shouldn't the former, apply to the latter? Why are you so willing to judge the rape
victim "from an outside perspective"?

Kristen R.

Laura mentioned that Hitler murdered the handicapped. She's completely right- one statistic I know is that the Nazis killed 80,000 to 100,000 mentally ill adults in institutions just between 1939 and 1941. It's heart-rending that parents will allow themselves to be scared or pressured into aborting children who aren't even 'mentally ill,' simply handicapped. I have a dear little cousin who has Down's Syndrome. For the first few years, he was 'behind' the others, but as he's grown older, he's become increasingly capable. I shudder to think if his mother had become fearful.

Ms Havisham

"knowing our own limitations, while not rushing to assume that we know other people's."

Wendy, what a beautiful and concise description of the pro-choice position.

pvtbuddie

/"How do you remove a chromosome from a developing fetus? How do you add one on (in cases where a missing chromosome is the problem)? " ~dangermom/

I don't know a way to correct the extra chromosome problem, but I just recently read about a treatment for a certain blindness, which is caused by a non-functioning chromosome. A virus containing a good chromosome is created, and then injected into the eye, where it then infects the target cells with the good chromosome, which attaches itself directly to the bad one! The virus is then disabled, presumably so it won't infect other cells with this eye chromosome.

(I would link the article, but the magazine, Science Illustrated, scienceillustrated.com , is new, and it doesn't have an archive.)

LZK

I was 41 when I got pregnant. As a nurse, I knew what my risks were yet I refused the amnio--why take even the slightest risk with a pregnancy medical experts told me would never happen? When my daughter was 20 minutes old they told me she had DS. In that moment of pain, exhaustion and weakness I regretted my decision not to have the amnio, but I realized how foolish regrets were the minute I held my baby for the first time.

She's 5 now and so beautiful that people stop me in the street with compliments. She's also hilariously funny, infuriatingly stubborn and the bravest person I know. I know this sounds like a cliche but each day with her brings new gifts--my husband and I look at each other and think "How did we get so lucky?"

dawn

I had a positive screen for Trisomy 18 on the quad screen for blood work. I didn't have the amnio. I did have a healthy baby however. I know that the T-18 babies are most often aborted because they will likely not survive. I asked the peri OB if I did have a baby with T-18 would I be able to have a c-section in order to have more time with my child and also would surgery be an option if there were heart problems with a T-18 baby and he basically said that if sonograms looked like the baby was a T-18 baby he'd push the amnio so we could plan to avoid c-section and heart surgery. Since I wouldn't have an abortion, he intended not to allow me any extra medical intervention to extend my child's life. I am glad to say I didn't have to deal with this scenerio as my baby was born healthy, but I did avoid amnio because I didn't want my baby to be automatically considered not worthy of care. Some moms who had T-18 babies were denied fetal monitoring during labor, denied a c-section to see their baby alive.

AK

I've seen some of the work of the doctors second-hand. A work friend was expecting about one and a half years ago. When tests showed there were problems, she was heavily pressured by her doctor to abort - or rather, have a "procedure" (his words). She was also emotionally pressured, told the baby would never have a normal life, her daughter would eventually be forced to care for him once she and her husband were unable to, he even told her in the next breath that is was not a baby but a lump of tissue! At the same time, she admitted that all she could think about was having and imperfect baby because her daughter is such a joy and so wonderful. She went ahead with the "procedure", but still feels guilt and depression and the loss of her baby. It makes me very sad...

Sharon

For the record, I'm personally 'pro-choice'

Pro-choice means you believe that in some/all circumstances abortion is ok. I wonder whether the foetus/baby is pro-choice or pro-life?.

Tom Babcock

Responding to Dangermom,
I didn't see myself as judging the rape victim--I only try to be consistent in opposing destruction of innocent life. I did not judge the quality of life of the person with spina bifida nor did I judge the quality of life of the child of the rape victim. In neither case did I look at the issue from the perspective of the mother, nor did I judge the mother.

Tom Babcock

Apologies to Dangermom. The post to which I replied was the one below--I misread to tag line. I responded to "A Man"

Reader

In the future? There are almost no Downs Syndrome _children_ under the age of 15 _now_. It is very rare that a see such a child, whereas in my own childhood, it was much more common. I think it's ironic that, if we ever really were able to pinpoint such a thing as a "gay gene," it would probably primarily be religous conservatives who gave birth to gay children, because they are the ones who believe abortion is wrong.

pvtbuddie

I thought for sure that there would be more comments here by today.

I think that with McCain's choice of Gov. Palin as his running mate, the survivability and manageability of Down's Syndrome will at least be better published.

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