Parents: Doctors need more care counseling expectant parents
September 10th, 2008
On CBS Evening News (video above is preceded by a commercial).
Sarah Palin’s son Trig is one of more than 400,000 Americans living with Down syndrome. “The Palins’ decision to have the baby has made her a role model to the parents of some 5,000 children born with the genetic disorder each year, ” CBS reports, adding that the diagnosis is for some “too grim to bear.”
Advocacy groups are now working to educate physicians and expectant parents about the lives of people with Down syndrome.
Jim and Sharon Vopal of New Jersey say the doctor who delivered their diagnosis offered them only a termination. When told they didn’t wish to terminate, they say, the doctor gave them no further information and showed them out through a side door.
The Vopals’ experience is a common occurrence, says Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City.
“What we have found historically is that physicians are giving biased information when they’re presenting prenatal diagnosis,” Allison said.
Teenager Jack Murphy tells CBS News: “I want people to know about me that I’m outstanding, outrageous, smart and intelligent and I know I’m good looking.”
The Vopals say they hope Americans will learn more about Down syndrome as a result of Sarah Palin’s candidacy. “She made her choice and we made our choice and other people will make decisions that are best for them,” Jim Vopal said.
In an accompanying notebook (above) Couric describes Down syndrome as “a heart-breaking diagnosis for any parent … hopes and dreams suddenly shattered … (It means) they probably won’t be able to live independently as an adult.”
UPDATE: In additional footage posted on the web, the Vopals tell Couric in more detail about their experience receiving a diagnosis of Down syndrome. They wish doctors were trained in delivering unexpected diagnoses, and that they had up-to-date information about Down syndrome. An excerpt:
Sharon Vopal: I don’t necessarily blame the doctors. I think I blame this rush to have, in the medical science community, better, faster, quicker. And yet they’re completing forgetting that on the other side of that very sensitive diagnosis, there are people.
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September 11th, 2008 at 1:00 pm
That notebook upsets me. It is biased and outdated. It has no place in 2008.
September 11th, 2008 at 8:56 am
In an accompanying notebook (above) Couric describes Down syndrome as “a heart-breaking diagnosis for any parent … hopes and dreams suddenly shattered … (It means) they probably won’t be able to live independently as an adult.”
Wow. Katie really helps in shattering the assumptions and unfair bias that the Vopals had to contend with in their doctor’s behavior. Have you noticed that on the cover of the magazines with Sarah Palin and Trig they use “afflicted” on one of them? I’m so very sick of hearing DS as something people “suffer” with.
I agree with so many on this site — Sarah Palin has yet to be along the road enough to be proclaiming she’ll be our advocate, but I hope she will in whatever roles she plays. I do know this:
The only candidate with a platform that is specific and covers details about how his administration would look at ways to make life and the future better for those affected by disabilities is Barack Obama.
I did a search on Hillary Clinton’s site and every democratic nominee. Also on all GOP’s in the primary race. Only Obama has disability agenda/platform and also nine pages on autism.
His father-in-law had MS. A close family friend has a son with autism.
No, his child is not affected like Palin’s child, but look at the websites for yourself and by all means press McCain/Palin to include it — their vision and goals in meeting our needs.
September 11th, 2008 at 7:02 am
Way to go Amy and Jack!! Two things struck me about this article. 1. The dr. says that a small minority grow up to be independent. That might be true according to the numbers, but I believe it represents a lack of opportunity more than a lack of ability. 2. In closing, Katie says that the candidate has not discussed increasing funding for special education, as if that is where the need ends. While Kids are always cute, the fact is that they are adults for many more years than they spend in school. Can we please expand the conversation to talk about employment and community-based supports?
September 10th, 2008 at 7:55 pm
It’s an excruciating dilemna. Do I regret my child? Not for a minute. If my child were raped, would I remain sanguine throughout a pregnancy? Not a chance.