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!