Down Syndrome Statistics Turned Upside Down — 5 Minutes for Special Needs

Down Syndrome Statistics Turned Upside Down

by Maggie



                               

I love hearing factoids and stats that raise an eyebrow and make me think a little deeper about things I thought I knew.  Information presented in a way meant to shock but in the end, I find, actually gives me hope when turned inside out or upside down.  Here are a few stats and how I choose to see ‘em.

STATISTIC: Forty percent of children with Down syndrome have congenital heart defects.

THE UP SIDE: That means 60% of children born with Down syndrome DON’T have any heart defects at all! Comparatively, in the general population 1 out of 120 babies have congenital heart defects. While the rate of heart defects is higher in children with Down syndrome, we have to remember that Down syndrome only occurs in 1 out of 733 births. For every ONE child born with Down syndrome, there are 5 children without Down syndrome born with congenital heart defects. That means there are a LOT more children without Down syndrome that have heart defects than there are children with Down syndrome that have heart defects. BTW — The heart defects common to infants born with Down syndrome are, in the realm of heart defects and their related surgeries, easily corrected.

STATISTIC: The life expectancy of people with Down syndrome is 55 years, up from 25 years in 1983.

THE UP SIDE: I don’t know about you folks, but I hope my children live longer than 55 years. Still, statistically speaking, that’s more than a 100% increase in life expectancy in less than 30 years. And the folks with Down syndrome who are living to 55 years old today were born in 1955.  Medical technology had just progressed enough to identify the cause of Down syndrome as the triplication of the 21st chromosome.  As such, babies could be diagnosed at birth but – given the world’s institutionalization mentality – babies were whisked away “before their parents could bond with them”.  There was no thought of family or community inclusion.  No intervention at all… never mind early!  And, most heart defects still went undetected and therefore uncorrected. As a matter of fact, sadly, well into the 1980′s, most infants born with Down syndrome were still being institutionalized. I couldn’t find a statistic for the average lifespan of someone with Down syndrome institutionalized for life but to give you an idea of how life in or outside of an institution compares: the average post-paralysis lifespan of a quadriplegic living in an institution today is 18 months compared to a quadriplegic living independently whose average post-paralysis lifespan is 15 years. You get the idea! The lifespan of an individual with Down syndrome in 1929 (institutionalized) was 9 years. In 1983 it was 25 years (most likely institutionalized). In 2010 it is 55+ (most likely instititutionalized for at least part of their lives). Who knows what the future will bring… but with advances in medicine, quality of care and family and community inclusion to address the physical, emotional and psychological development of individuals with Down syndrome, their lifespan will rapidly approach the average lifespan for those of us without Down syndrome.

STATISTIC: The number of births of infants with Down syndrome has declined by 8 percent since 1989, and the number is expected to decline further after a recommendation last year by the American College of Obstetricians and Gynecologists that all mothers undergo screening for Down syndrome.

THE UP SIDE: I’m not sure where the bright spot is on this one. Decreasing the incidence of Down syndrome means an increase in selective termination (read: abortion) of fetus’ prenatally diagnosed with Down syndrome. Is that a good thing? I promise you, many lives — including my own — have been greatly enhanced by the presence of people with Down syndrome. And, if we’re terminating children with DS, should we also terminate the 1 in 120 “typically developing” babies born with heart defects while we’re at it? After all, the heart defect is often the reason sited by medical professionals for terminating the fetus with Down syndrome. Often detectable in utero, we could rid the world of everyone born without a perfect heart.  Frankensteinian medicine if you ask me.

STATISTIC: 88 percent of children born with Down syndrome are born to women under 35.

THE UP SIDE: Us women over 40 who have children with Down syndrome should stop feeling so guilty. Down syndrome is an ACCIDENT in nature. We can no more cause it to happen than we can prevent it from happening. It’s not due to our age and it’s nobody’s fault. Just God’s/nature’s plan.

STATISTIC: Eighty percent of pregnant women who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancies.

THE UP SIDE: There is none. People looking for the perfect baby are willing to throw away anything that doesn’t quite meet their idea of perfection. We’re a step away from terminating all babies with detectable imperfections! Think about it… there are genetic tests to predict certain types of cancers now. Do we test and terminate those babies as well? God knows cancer care is a huge financial drain on the health care system…. no? Is terminating in utero because the baby isn’t perfect according to some societal norm so much more acceptable than terminating a person with the same defects? For sure… We’re sliding down a slippery slope and coming dangerously close to a selective “Aryan race” mentality.  Every life is worth living!

While I continue to seek out information and find such statistics interesting to consider. Each fact, and each person’s life — with or without Down syndrome — can be viewed from a glass half full or a glass half empty perspective. Truly, there is an upside to everything. A lesson learned. A benefit realized. Down syndrome cannot be prevented from occurring. It is the perfect example of natural selection… It just happens. Which tells me that our children with Down syndrome are meant to be here. Yes, there are lessons to be learned. Benefits to be realized. Their lives and ours to be lived to the fullest… together.

My cup isn’t half full… MY cup runneth over!

Email Author    |    Website About Maggie

I've become a self-proclaimed novice in the pursuit of [my own] happiness and in finding pockets of peace amidst the chaos of raising my 7-year-old identical twin sons who were blessed with an extra 21st chromosome (aka. Down syndrome) and my beautiful daughter (ADD) who vacillates between being helpful and being 10.

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1 Courtney January 8, 2011 at 11:24 pm

Very interesting! I love looking at statistics this way, too.

Can you expand on this statement? “And the folks with Down syndrome who are living to 55 years old today were born in 1928.” Someone who died at 55 years old in 2010 was born in 1955.

Like you, I find the final statistic depressing. My children don’t have Down syndrome, but they did have medical problems that put them as strong candidates for termination. We are very glad that did not happen. How about looking at the 20% of pregnancies where the parents are delivering a baby with Down Syndrome, with their eyes wide open? I know, it’s not much comfort … Or maybe you could compare that statistic to other information parents can find out during pregnancy that leads to an even higher termination rate. Or maybe there’s something more going on in those families, such that they either know they won’t be able to provide a good life for their child, or some extra medical complication that is correlated to the “definitive prenatal diagnosis.”

Thanks again for an interesting post.

2 Maggie January 9, 2011 at 9:21 am

Sorry for the bad math folks! LOL – Math was never my strong point. 1929 was significant in the history b/c the lifespan of a person with DS was 9 years at that time… The Great Depression obviously impacting treatment and care of folks deemed less important than the “able-bodied”. I’ve updated my post to include the significant developments in 1955 pertaining to the treatment and, therefore, lifespan of folks with DS during this period. Thanks for catching this! ;o)

As for pregnancy/termination stats… very sketchy given the personal nature of the decision. But the in-utero DS diagnosis and termination stat is easy to read b/c of the specific testing.

3 Kate J January 9, 2011 at 2:24 pm

The life expectancy for our daughter’s syndrome also went from “less than a year” to “normal” when they stopped the automatic institutionalization. It was the families of those children who refused the “experts’ ” advice, and raised their own children in their own families and communities that turned this around. They are my heroes.
I lament the “seek-and-destroy” mission that goes along with much of the recommended prenatal testing these days… I think it coarsens the attitudes of people toward the handicapped in general. As in when people ask me if I had known about my daughter’s disability prenatally… couldn’t I have “done something” ? And if we had had that information, suggesting even a DUTY to prevent her from being born!
Bad for all of us, because at some point or other in life, we are all inconvenient to others.

4 Maggie January 16, 2011 at 10:29 am

Wow! Well said Katie! I couldn’t agree more. It’s the sort of thing I want to remind folks of as they’re giving us attitude. Not that I wish the same upon them, but showing a little compassion would be nice.

5 Katie January 9, 2011 at 3:14 pm

thank you so much for saying these things. the way the world perceives disability is so wrong.

6 Renita Maassen January 9, 2011 at 3:46 pm

refreshing! fantastic post! thank you for sharing. happy heart. mom of a 9 year old son with down syndrome. he has taught me more than anything or anyone in my life. i would have to agree that he has made my cup more than full. love to you!

7 Maggie January 16, 2011 at 10:31 am

Thanks Renita. Prior to having My Boys, I once read that the highest level of parental satisfaction is reported by parents of children with Down syndrome. I didn’t understand how that could be so then… But, I do now!

8 Gretchen January 9, 2011 at 5:36 pm

In many areas of the world, the rate of birth of children with Down Syndrome has actually been on the rise according to US & worldwide statistics. Altho there are bleak-looking statistics about women choosing to terminate due to a definitive diagnosis, many more people with Down Syndrome are being born than at any time before.
http://abcnews.go.com/Health/w_ParentingResource/syndrome-cases-rise-women-delay-childbirth/story?id=9216796 for one article

9 Maggie January 16, 2011 at 10:33 am

Makes you wonder about Higher Powers and how maybe our kids truly are meant to be here! Even as the death rate rises from terminations, Down syndrome continues to exist!

10 KDL January 12, 2011 at 7:42 pm

My daughter has ASD and I both long for and fear the arrival of prenatal testing for autism. For one thing it’s hard to know if the severity of the condition would be clear from such testing and many people currently have a very narrow view of what autism is. I think early testing would be good in terms of increasing the rates of early intervention, but I think the prenatal termination rates would undoubtedly increase. It is a double edged sword.

11 Maggie January 16, 2011 at 10:34 am

Scary thought. I’m sure the termination rates would increase due to ignorance. I know that the impact of autism, like Down syndrome, on an individual varies widely and cannot be predicted from a test. I’m all for the advancement of science but…

12 Maggie January 16, 2011 at 10:35 am

Thanks, everyone, for reading and commenting!

13 Mrs. Life January 19, 2011 at 4:22 am

Very informative and interesting. It’s always a good read to know about the bright side of situations that most people think of as disasters and unsolvable. Thank you for sharing!

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