To life

Three recent articles about Down's Syndrome and people who live with it:

A mom reacts to the recent call by the ACOG to do Down Syndrome testing on all pregnancies:

She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so I thought. New in town, I had come to the park in hopes of finding some friends for myself and my little ones.

Her eyes flicked over to where my daughter sat, shovel gripped in a tiny fist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. "Isn't it a shame," she said, an eyebrow cocked in Margaret's direction, "that everyone doesn't get amnio?"

It's been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians and Gynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox -- uninformed, judgmental and unable to entertain the possibility that people with disabilities have something to offer.

From today's Chicago Tribune:

Two years ago, Anita Krach of Streamwood learned that her fetus had Down syndrome through a phone call from a perinatologist she had just met during the tests.

Later that day, the same doctor and a genetic counselor outlined the health problems associated with the condition at every stage of life for Krach and her husband, Michael.

"There was no positive thing that was said," Krach said. "Not one."

As Krach, then 18-weeks' pregnant, left the emotional session, the genetic counselor warned her not to call a Down syndrome support group because, she said, "they'll paint a rosy picture."

Doctors acknowledge they've heard such scenarios but say they've become more sensitive and balanced, in part due to the efforts of Down syndrome organizations.

"We never want to give the impression they should or they have to terminate," said Elyse Weber, a genetic counselor at the University of Chicago Hospitals. "What we're here to do is give them information and give them an environment to make the best decision for them."

Krach's son Michael, now a happy 2-year-old, receives therapy six times a week, has walked since he was 18 months old and has a vocabulary only slightly delayed, his mother said.

Though she rejoices in his achievements, Krach shudders as she recalls the agony of her decision--days not eating or sleeping as she wrestled between religious beliefs that said abortion was a sin and the notion that she didn't want to bring a child into the world only to suffer.

Krach decided to have the child after talking to two mothers of children with Down syndrome, one of them Gianni.

At Dr. Ravi Trivedi's office in Hoffman Estates, Gigi handed the doctor a colorful calendar featuring herself and other children from the playhouse dressed as actors, painters, even synchronized swimmers.

"You are beautiful," Trivedi marveled as he hugged the little girl who is learning to read and loves to sing, dance and pose for the camera.

Trivedi said his perception of Down syndrome has changed since Gigi's birth.

"There is so much variation [in mental retardation] that most patients with Down syndrome do not have major problems," Trivedi said.

"When you really see the kid growing up, they're normal."

My Lovely Son; The Hollywood Star:

Sandy Lewis was devastated when she learned her son had Down's syndrome. But here she tells how Max overcame disability and prejudice to achieve his dream and win a leading role in a new film - alongside Cate Blanchett and Bill Nighy - which is being tipped for Oscar success.

On a blisteringly hot September day, Cate Blanchett is on a film set dancing with my 13-year-old son, Max. With her usual elegance and charm, Cate holds his hands and moves her body to the rhythm as the cast and crew cheer and clap. Max loves every minute of it.

Perhaps I shouldn't be surprised.

For Max, who has Down's syndrome, life is one big, glorious adventure. Thanks to his passion and talent, he is starring in a new Hollywood film alongside Blanchett, Judi Dench and Bill Nighy, and is ratcheting up a list of parts any actor would kill for.

Also check out the blog post commenting on that first piece, by Barbara Curtis, a writer, speaker and mother to twelve children, including four with Down Syndrome - 1 biological and 3 adopted.

And this blog entry of Barbara's - "About that extra chromosone"

Before Jonny's birth, I'd prepared announcements with a line from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." I sent them proudly, adding a note about his extra chromosome and our great love for him. (One friend's comment: "Well, Barbara, he'll never be president, but isn't that just as well?" And this was 1992!)

        He's been a gift I never would have thought to ask for, bringing lessons I never knew I needed to learn. The greatest surprise is this: Our life together has been less about my helping him reach his potential than about him helping me reach mine.

        Sometimes when we're in a museum or a mall, in the middle of a good laugh, I catch someone off-guard, looking uncomfortable and standoffish. I know that as long as we live some will see Jonny as having a little less. I've learned he has a little more. And so does our world because he's here.

George Will:

What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.

Comments

[Shaun G]

Adding to the many sadnesses of children being aborted because of a genetic condition is the fact that those children whose parents dare to let them live are all the more "anomalous," making it even harder for them to be accepted.

For example, when I was growing up, it was not uncommon to know someone with Down syndrome. There was a boy in my cub scout troop; there was the sister of a classmate of mine. We may have had the sense that these kids were "different," but they were at least familiar.

That such children may soon be unfamiliar to the great majority of Americans is scary -- because it is easier to fear what we don't know.

[Anon]

When is ACOG going to realize that some families just don't want to know? This, like their stance on cystic fibrosis screening, is a thinly veiled attempt to encourage eugenics. They don't want "non-directive counseling" done. Termination of the fetus is the de facto goal, no matter how much ACOG talks about "offering options to the pregnant mother" once the test comes back positive.

The time to discuss options is BEFORE the test- as in- "There is no treatment for Down's Syndrome. If your baby has Down's Syndrome, the only alternatives are abortion or carrying to term. Knowing this, would you like to have the test?" Guess what- a lot of them don't want the test. It's all in how the doctor phrases it, and if the patient gets ALL the available information (which, by the way, is not taught in medical school). We know how ACOG wants doctors to phrase it. They're all about choice, we know that, unless the choice doesn't suit their agenda.

A quick sweep through the literature will tell you how most obstetrical researchers (perinatologists) view this. Nada, zip, zero on Down's syndrome except how to get rid of such a pregnancy. Of course, the research establishment doesn't know their patients by name, their whole family, their religious beliefs, or anything else about "the patient." But the academicians set ACOG policy, that much is obvious.

My question is, what are they going to do when there's a screen for every genetic defect? That day is coming- in fact it's right around the corner.

[Ken]

You know they do call amnios "Search & Destroys", don't you?

[Paul]

As a young man in my early twenties I worked in a state institution for mentally challenged adults and youth. The sight of twisted limbs and physical deformities with beautiful minds trapped inside left an indelible impression on me. It taught me humility and how God's great gift of life comes to us in a variety of ways, all good. The greatest joy was the time I spent with those who had Down's Syndrone. They posessed a view of the world that was fresh, spontaneous and full of life. They were humorous and compassionate and became best friends unconditionally. Those physicians who painted that false picture of despair were never as fortunate as I was in my time spent with those beautiful children.

[scotch meg]

My husband saw a patient Friday (for other reasons) who told him about her pregnanacy experience with Downs. She had a blood result consistent with Downs, and described the extreme pressure to abort from doctors, family, and friends. A horrible and unforgettable experience. In the end her child was not a Downs kid, and she is now on the warpath against prenatal testing. For her the problem was not so much that the test was wrong, as the incredible pressure brought on her to abort her child.