Down Syndrome — Human Choice Doesn’t Catch Up With Technology


Maybe there are people out there who do not know what Down Syndrome is, although at 1 per 691 births it is the most common of chromosomal abnormaities.

I still remember my next door neighbor, little “Stevie,” who was the youngest in a large family (seven children as I recall) so mother may have been a bit advanced in age when she had him.  I thought of him then (I was not over six or seven) as a sort of human stuffed animal, as he loved hugging and was profoundly retarded, able to do little on his own.  I learned even then that people said what such children lacked in intelligence (and muscle tone and

cardiac strength, I later learned) they made up for in affection, and that sounded fine, and my brother of blessed memory and I played games with little Stevie.

We made up the games so that a person could get hugged if they won or lost.

For a more precise clinical description intended for the layman, try starting on the page representing the Down syndrome association.

There can be no doubt that this syndrome presents some substantial challenges in life to the bearer.

Now, with increased knowledge — and some increased laws, it can present a challenge to mother.

Mother has traditionally been the one to make decisions about life of baby, but now she has more decisions to make, and lots more information to decide upon.

The diagnosis came at 24 weeks of pregnancy in a state that allowed abortion (Massachusetts) up to 26 weeks.  A “pro-information” group counselled.  The Down child went to pregnancy and now Mom is happy.She was counselled by a pro-Down group, although she thought they were “pro-information.” Objective, in other words.

It is true that life for a Down syndrome child, with everything improved since I lived next door to little Stevie, is better than it ever has been.  Corrective heart surgery.  Improved educational methods.

There are lots of problems here.

As we learn more about genetic testing, Mothers, who are expected to make decisions about the child who is (or will be) within, get increased responsibility as well as increased problems.

Genetic markers and predictors are good, and are available earlier and earlier, all good.
Inappropriate and antiquated information about life expectancy, needed services, and the like is provided to mothers.  It is really easy to believe this can be done by doctors, who don’t usually have the time to read a lot of the research and we do not know the specialty or training of those who give out the info.

Of course, even the most altruistic of organizations of people who have Downs children can be expected to be unbiased.
Mothers cannot be expected to be brilliant decision makers (expecially when so few pregnancies seem to be planned; currently, it is estimated 80% of Downs live to 60 years.  Does anybody know what they will be like that much down the road???

The toughest thing in the world is to teach people to make decisions.   spoke ince with someone imported from Europe to teach “critical thinking;” he was panned on “yelp,” mostly for being “demanding.”

We certainly can’t expect Darwinian evolution to advance the human.  It worked great in the Galapagos, where tiny sub-populations are seperated, breeding only with the small number of members of their same populations.

We are a global village, and our numbers breed with each other joyously, homogenating the human race.

Not a bad thing, but don’t stay up waiting for our brains to evolve.

The child discussed in the original piece cited above is already five years old.

Me, I would have asked for some kind of emergency university genetic counseling meeting, not called an organization with a necessary bias, but that is me.

There are, according again to that originally cited article, people who want to remove Downs from the face of the earth, and people who think they are the most precious people on earth.

Mother must get current info, which doctor may be unable to provide.  Doctors have to act authoritative to get through life practicing a profession where they always make decisions with whatever data is available.  With the internet and more data than anyone can assimilate, this is a great time to rip the doctor off his or her pedestal and go for real, truthful, up to date, and unbiased information.

Mommies, please get all the information,

Please try to think before you conceive, and as early as possible during.

What is coming is complete genomes of a human, with potential future diseases.

I think it is only a matter of time before they are available in utero.

Every Mommie will want to know what a doctor can know, even if limited to her own progeny.

Once your child is born, he/she is your child forever.

Take heart, all you women who always said you wanted to be healers.

Know and heal your own, and about them, be as smart as doctors.

Luckily, this does not have to be that hard.

It seems like it is an eternity since I read that a doctor has to know about 500 diseases to make a living. You only need to learn about the one or two or few that concern you.  You can be better informed about your personal situation that the average doctor can — especially a generalist.

Just know what you got, and what your child might have.


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