NYT: Down Syndrome and Quality of Life, continued

Letters to the editor.

Re “The Truth About Down Syndrome,” by Jamie Edgin and Fabian Fernandez (Op-Ed, Aug. 29):

Two and a half years ago, I had the very choice the biologist Richard Dawkins and others deem so simple. Continue my pregnancy with a Down syndrome fetus, or terminate? I was 37, happily married, with one nondisabled child.

I have a Harvard degree and a graduate degree, and somehow the utilitarian calculus Mr. Dawkins cherishes (not to mention notions of what might happen 40 or 50 years down the line) provided zero assistance in that moment.

It was simply: Do my husband and I feel able to care for a child with a lifelong disability, whose severity we cannot determine but who will most certainly be significantly compromised? Who will also be able to love and be loved, and achieve within the limitations we all bear?

We went ahead, and I can only say our son has healed the doubt and fear in our hearts.


Great Barrington, Mass., Aug. 29, 2014


To the Editor:

Jamie Edgin and Fabian Fernandez write that virtually all children with Down syndrome will develop Alzheimer’s disease later in life. They write about this probability as if it were a mosquito bite, not the exhausting, nightmarish and costly situation that it is, with no upside whatsoever.

This occurs when the “child” is 40, and the parents, therefore, in their 60s or 70s, and badly in need of rest and time for themselves.

The “truth” about Down syndrome and dementia is that when you are faced with them, you deal as best you can, but you should not be talked into choosing them if it’s possible to make another decision for yourself and your child.


Cincinnati, Aug. 29, 2014

To the Editor:

As a mother of two children with Down syndrome and a concerned citizen, I question the wisdom of trying to predict quality of life based only on someone’s genes. Jamie Edgin and Fabian Fernandez carefully made the point that having Down syndrome does not hamper the ability to lead a happy, fulfilling life.

To be sure, not every person with Down syndrome is a happy person leading a rewarding life. There are grumpy, poorly behaved people with Down syndrome. There are plenty of those in the general population, too. The truth about people with Down syndrome is that they are individuals; most are happy, some are sad, some are smart, others not so much. They all add value and diversity to our society.

Now, when their existence is under severe threat because of advances in prenatal screening, I applaud every effort to underline the positive facts about living with Down syndrome.


Heiloo, the Netherlands, Sept. 1, 2014


To the Editor:

While I respect Richard Dawkins’s expertise and scholarship on Darwin and evolution, I take issue with his views on Down syndrome.

My son, Jason Kingsley, who has Down syndrome, has co-written and published a book (“Count Us In: Growing Up With Down Syndrome”); plays the piano and violin; paints, lives and works in the community; and recently performed as Snug the Joiner in a New York City performance of “A Midsummer Night’s Dream.”

While not all people with Down syndrome will achieve at this level, it is not possible to predict at birth, and certainly not prenatally, what their level of accomplishment will be.

What is safe to say, however, is that my son will never be the chief executive of a large corporation who remorselessly cheats millions of people out of their life savings. He will never be a lawmaker obstinately determined to obstruct progressive legislation.

I question who brings more suffering into the world.


Briarcliff Manor, N.Y., Sept. 2, 2014

The writer is a member of the advisory board of the National Down Syndrome Society.

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