The end of Down syndrome

My wife (who is also smarter than I am) pointed out that an unfortunate result will be that for those who won't abort, the R & D on DS will dry up. Apparently, they are making real progress which will become completely unprofitable & thus won't happen.

 

I was thinking the same thing. (Though, I'm sure you're wife is much smarter than me.)

Too few people with it, will naturally lead to less research.

 

We had our first child when my wife was 35, our second when she was 37 and our third when she was 42. We were blessed each time with healthy children. We did have testing done, and I don't know what we would have done had a test come back positive. I do know that it would not have been as simple as not wanting to be inconvenienced. There was also the non-trivial matter of what effect a DS sibling would have on the older children.

 

It might be a bit different up here in Canuckistan.

My first child was born when my wife was 35. We did an ultrasound where the fluid on the back of the fetus's head was measured. There is also a bllod test. Basically you get a number from this combination at then slots in the odds.

The amnio can be done to confirm. With that pregnancy and another one 3 years later we never did the amnio but the math from the tests was favorable.

I am a staunchly pro-choice person but I could not have asked my wife to abort after seeing the heart beat on the ultrasound, even if it had been a Downs baby.

 

Often lost in the abortion debate is the fact that <a href="http://www.guttmacher.org/pubs/fb_induced_abortion.html">about 61 percent</a> of women who have abortions already have one or more children. The stereotype is the irresponsible teenager, but the reality is most women make the choice out of concern for their existing children.

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I dated a guy who had a DS sibling in his mid 20s when I met him. While "K" was sweet and funny, he couldn't be left unsupervised and was prone to violent frustration. Handling him on a daily basis was a great deal of work for the entire family. Their father has now passed, and their mother is elderly, so it will soon fall to the siblings to take K into their homes. Not that they won't do it, but it's a burden on their young families.

I don't know what the answer is. But I know that couples who choose to terminate shouldn't be vilified or politicized by those who haven't been there.

 

Here is the thing about having a child with Down syndrome (not to exclude other developmentally disabled people) that's difficult to understand very well without first-hand experience: These folks generally improve the lives of everyone around them.

Sure, they require more assistance, not just through their childhoods but through their entire lives. That includes assistance from family, friends, and government, which most people rely on to provide programs and, eventually, assisted living opportunities. Their existence is not without economic and emotional strain. It requires more from you and your community.

But the rewards, to me, are far greater. Neither my wife nor I would hesitate to say that our son has improved our lives. It's not saying a whole lot but I'm a better, less selfish, more giving, more patient person because of the relationship I have with my son, who's now 21, and his large circle of friends. I spend a lot of my time around elite athletes and their games but the best two hours of every week come Sunday afternoons when I coach, depending on season, soccer, basketball or baseball with my son and his friends. They teach me more than I will ever teach them.

And, while I have no real basis for comparison, I know in my heart that my daughter's bond with her older brother and his friends has been a significant factor in her success and development. From the time she intuitively understood the situation as a toddler, she has been a precociously mature and selfless, which has, in turn, enhanced all of her relationships and her perspective.

With all of that said, I don't know what our choice would be had we known or were to know with another pregnancy that the fetus had Trisomy 21. I do know I would never judge a person based on that very personal and difficult decision.

 

Sounds like you have two incredible kids Cranberry.

I was impressed when I learned your daughter was going to Yale. But, I see now, you have a lot of reasons to be proud of both of them.

 

One thing that gets lost in the reporting of medical developments like this is that there's still a lot of uncertainty even with a positive result. Thus, because this new test is much more accurate, a lot MORE non-DS pregnancies (proportionally speaking) are going to be terminated if indeed pregnant women increase their testing.

The test is 99.1% accurate in cases in which the fetus is DS positive. It is 99.8% accurate when the fetus is NOT DS positive. So let's suppose a 42-year-old woman gets back a positive result from the test and decides to terminate as a result. How likely is it that she terminated for no reason? Close to 11%*. For a 34-year-old woman with a positive result, this likelihood is close to 50%.

*This is a simple application of Bayes Theorem: Prob. Positive given Downs x Prob. Downs/[(Prob. Positive given Downs x Prob. Downs)+(Prob. Positive given Not Downs x Prob. Not Downs)]

 

I know several people with Down syndrome children and they are great parents and the kids are wonderful and loving.

The problem is that most of these kids are unable to take care of themselves so it's a scary situation when you are older.

 

This.

I have close friends who have three kids, 12-year-old twins (boy and girl) and a 3-year-old son with Downs.

To put it mildly, the second pregnancy was not planned. The mom was 35 at the time she got pregnant, which I think is the cutoff when the the percentages go up considerably. They found out ahead of time that the kid was going to have Downs and they had essentially decided to abort and then backed out at the last minute. They're both Catholic, but knowing them, I doubt that was what made them change their mind. As my friend said, "It's really easy to say you would do something until you actually have to do something..."

I don't know if they regret the decision. I would never ask someone that kind of question. I know they love the kid. They treat him great and the kid will have everything a kid could possibly need.

That said, my friend said there's no question that their son takes their attention away from the twins. They're lucky enough to be able to afford full-time help. The twins were old enough when their brother was born that they know the drill and from the sounds of it and what I've seen firsthand, they handle it incredibly well.

I talked to him last week and they had taken a weekend away for their anniversary and they had to come home after a day because their son was flipping out.

They're such good parents, but they both look like they've aged about a decade in the last three years.

It's a tough situation.