Coping with Down Syndrome

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September 4, 2008

Last week we talked about the brain: Ted Kennedy’s brave battle with cancer, Joe Biden’s two aneurysm surgeries, and Cindy McCain’s stroke.

This week Down syndrome is on many people’s minds. In her speech last night, vice presidential nominee Sarah Palin said that "special needs children inspire a special kind of love," and she pledged to be a "friend and advocate" to those in the same boat if she’s elected.



I called a top expert on Down syndrome, who reminded me that while TV may have presented a pretty picture of Palin and her family in the Xcel Energy Center in St. Paul, including baby Trig (with Palin, above), the wee one may have a tough road ahead. “There is a whole spectrum when it comes to Down syndrome,” says Kwame Anyane-Yeboa, MD, a professor of pediatrics specializing in genetics at Columbia University Medical Center. (Down syndrome is a chromosomal abnormality.) “Some babies don’t have serious complications, but others may need surgery right away or down the road for heart, gastrointestinal, thyroid and other problems.”

“Decades ago,” he says, “many of these babies were institutionalized, but we know kids raised at home do better.” That takes a lot of commitment. For example, Dr. Yeboa says, “Down syndrome babies have low muscle tone and benefit from early intervention, such as physical therapy and occupational therapy, often where the therapist comes to the home every day. Their physical development is delayed; most sit by the time others are walking. Speech is another area with many limitations, and most need special education. Many can’t live on their own as adults, although some thrive in group homes.”

Dr. Yeboa says he is seeing fewer Down syndrome babies than he used to, mainly because of earlier screening methods (a blood test can indicate risk as early as 11-12 weeks into pregnancy). Today, one in five women has a child when she’s over 35. The risk of Down syndrome at 35 is 1 in 400. At 40 (Sarah Palin is 44), it rises to 1 in 100. (At age 25, in comparison, it’s 1 in 1,250.)

There will continue to be much debate about how Palin will juggle it all, although, as Giuliani pointed out in his speech last night, would anyone be asking that question if she were a man?
 

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By KathyR21, 10/06/2008, 10:30 AM EDT

The reason that the doctor is seeing fewer babies with Ds is because 90% of parents who receive a prenatal diagnosis chose to abort. Many doctors give an unnecessarily negative view of what life is like for people with Down syndrome. When my son was born 10 yrs ago, I was very depressed and worried. Now, it amazes me that i felt that way, because life with him is so much richer than I ever imagined it could be. Palin has a supportive, resourceful family. I am sure she will 'juggle' just fine.

By doihavtasay, 10/06/2008, 10:21 AM EDT

Trig is a baby WITH down syndrome, not a down syndrome baby. You do NOT need therapy every single day, and the only truly hard road is the one where you have to deal with the prejudice and ignorance such as stated in this article! Why consult the *real* experts on DS- the PARENTS. :-) Visit our new blog : http://downsyndromeinfoexchange.blogspot.com/

By HealthDirector, 09/05/2008, 2:46 PM EDT

Thank you for addressing this important issue. As was briefly mentioned, occupational therapy can play a significant role. It is important to note that occupational therapy intervention should commence as soon as a diagnosis of Down syndrome is established. To elaborate on Dr. Yeboa'€™s point about low muscle tone, feeding may be difficult for some infants with Down syndrome due to hypotonia and weakness of the muscles of the cheeks, tongue and lips. Occupational therapists can suggest positioning and techniques to facilitate feeding. Additionally, occupational therapy may address early positioning to promote the normal neuro-motor control and structural alignment necessary for optimal development of motor and exploratory skills. These two examples are just at the infant stage. Occupational therapy helps individuals with Down syndrome by creating programs to develop and utilize skills across the lifespan, enabling them to live life to its fullest. --Asha V. Asher<br>

By HealthDirector, 09/05/2008, 2:45 PM EDT

Julie here. I'm posting the following informaiton below on behalf of Asha V. Asher, Developmental Disabilities Special Interest Section Chair, American Occupational Therapy Association, who wasn't able to make the post work:

By hamtech, 09/04/2008, 3:53 PM EDT

very true statement about the fact that all of this wouldn't be an issue is Palin was a man.

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