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September 10, 2008 5:41 PM

Katie Couric's Notebook: Down Syndrome

Posted by Katie Couric
You've probably seen pictures of Sarah Palin and her husband with their five month-old son. He's one of the 5,000 babies born in this country each year with Down Syndrome. It's a heart-breaking diagnosis for any parent ... hopes and dreams suddenly shattered. It means their won't be able to live independently as an adult.

Advocacy groups are using Palin's candidacy as a chance to educate Americans about this genetic disorder, and that includes advising doctors to give expectant couples the entire picture, and not just one option.

In many cases, a woman who is told she's carrying a baby with Down Syndrome terminates her pregnancy. That can be an agonizing choice, but the parents of children with Down Syndrome say doctors do need to give parents all the information they need and deserve so they can make the choice that's right for them.
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katie couric ,
down syndrome ,
sarah palin
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Katie Couric's Notebook
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by ttbear1 September 13, 2008 12:04 AM EDT
As a mother of a little boy with down syndrome--I just want to say how much of a blessing he has been to me and our family. Sure the news is heart-breaking--your dreams are shattered---until you see that sweet face and help them grow and learn---reaching the same milestones as other children---just a little later. He is the sweetest child--unconditional love for everyone--hugs and kisses--not ever being embarrassed of how much his parents LOVE him. New dreams are in place--because honestly--do typical children do all the things we want them to :)Children will do what is expected and encouraged---if we as parents do not expect our children to accomplish things they won''t. Children w/DS need to be encouraged and challenged--just like typically developing children.
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by cpm7 September 12, 2008 2:34 AM EDT
For a much more balanced piece on raising a child with Down Syndrome listen to this:

http://www.wnyc.org/shows/bl/episodes/2008/09/09/segments/108539
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by q1234biteme September 11, 2008 10:02 PM EDT
isn''t she(Palin)anti-abortion? :x
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by bjd4 September 11, 2008 8:40 PM EDT
Dear "Joseph8221"....

Re: your comment: "Why not feature mothers with just delivered babies and those in pregnancy, and those kids in school, and working."

I, TOO, WOULD LIKE TO SEE ON CBS - OR ANY OTHER NEWS STATION - A PANEL OF PARENTS OF CHILDREN OF ALL AGES WITH DS AND HAVE THEM GET OUR VIEWS DIRECTLY - THAT WOULD BE ABSOLUTELY ENLIGHTENING TO MANY!!!
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by bjd4 September 11, 2008 8:37 PM EDT
Dear "Maryland443":

While I agree with you about equal coverage, who are YOU to say it''s harder for those living with Down syndrome or for their families?

While it may indeed be more challenging early on - and that depends on each situation - PLEASE DON''T GENERALIZE OUR FAMILIES INTO YOUR LITTLE BOX, HUH?
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by wcwr1 September 11, 2008 7:21 PM EDT
God chooses. We should obey Her choices.
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by wcwr1 September 11, 2008 7:19 PM EDT
maryland443, electing the McCain-Palin ticket will not overturn Roe vs Wade. If only it were so.
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by ericdrexil September 11, 2008 6:22 PM EDT
Who has the right to proclaim a life worth living? My son is 19 and has challenges with many activities. He loves life. I love him. If I knew he would be in this condition I would do exactly as I have done. He is still learning. Wish I could say the same for you.
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by bethj3 September 11, 2008 5:00 PM EDT
On the program you stated that there were 400,000+ people in the U.S. with Down syndrome, and that 5000 babies with Down syndrome are born each year. These numbers seem to me to be mutually inconsistent - assuming a constant birth rate, that''s 80 years to get to 400,000, with NO deaths - yet even 25 years ago life expectancy for children with this syndrome was far lower than it is today. Although the number of annual births probably hasn''t been constant, even a much higher birth rate would have to be balanced against a higher death rate in making this calculation. Can someone tell me where the 400,000 estimate comes from?
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by guamarcy September 11, 2008 4:57 PM EDT
I had two of my four children in my forties. When I was pregnant with my youngest, the blood screening indicated that my child might have Downs. I opted to have a amnio, not to abort the child but to plan to fly out of Guam before her birth so that my special needs baby would have access to the best medical care in California. Because I knew that there are inherent risks as a mother of "advanced maternal age" (alert on my file) and that a Downs baby often has other congenital conditions, I could not (airline rules) and should not (my concern for my baby) fly after my 7th month. Fortunately, I naturally delivered a healthy and beautiful baby girl on Guam on 2/15/97.

I tell my story because I have been puzzled since first hearing about Palin, how she could possibly have risked her baby by flying to Texas during the last month of her pregnancy with Trigg and why she hid the news that he would have Downs Syndrome from her children, notably Willow who independently recognized his condition after the birth.

I am also puzzled why Katie did not make any disclaimer last night about the McCain''s (re "lipstick on a pig" ad) unauthorized used of Katie''s clip re sexism in politics???
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by dsmomnj September 11, 2008 4:19 PM EDT
This blog needs to be rewritten. A person with Down syndrome is not, unlike The doc from Albert Einstein College of Medicine claimed last night, relegated to a life of dependence in this day and age. Each person with Ds is unique, and many adults with Ds hold down jobs (and companies LOVE the dedication that people with developmental disabilities tend to show in the workforce), and some actually do live quite independently. That number is growing as a new generation of kids with Ds, who have been raised in loving homes and given proper education, become young adults.

Katie, your program NEEDS to do better justice to people with Ds. I know you''re planning other stories on Ds, too, and I sincerely hope that the Ds community will be heard loud and clear. PEOPLE WITH DOWN SYNDROME ARE CAPABLE PEOPLE, AND THEIR FAMILIES ACCEPT THEM FULLY. The medical community holds a strong bias against letting babies with Ds be born, and they look at our kids as needing to be "fixed." You come to my house and tell me what you think needs to be fixed about my daughter. You spend time with us, and see how "shattered" we are.
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by maryland443 September 11, 2008 3:46 PM EDT
I object to the piece because, like many other stories in the media right now, it is actually giving unfair coverage (and subtle kudos) to Sarah Palin. Sure, she has a baby with Down Syndrome. But so what? Can we now have an equally complimentary story about Biden''s struggle after his family was killed in a car wreck, or specifically how "heroic" it is when people move on from major grief like he did? If we''re going to give Palin credit for something so arbitrary, let''s give Biden equal time for something similarly accidental. Or let''s have a pice on successful adult children of single parent homes, like Obama. Let''s be fair. (Or be a news organization that feels no need to fairly represent both sides.)

With that said, if Palin and McCain were elected, there would be nothing heroic about choosing to have a baby with Down syndrome, because every pregnancy would have to be brought to term. There would be no choice in the matter at all. You aren''t a hero if you had no choice.

And to put it bluntly -- we shouldn''t romanticize people with Down syndrome. Life is harder if you have Downs, or if a family member has it. Let''s not sugarcoat it.
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by joseph8221 September 11, 2008 2:48 PM EDT
Starting today, I will launch for boycott of your newscast.

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by joseph8221 September 11, 2008 2:46 PM EDT
Katie, you have committed diservice to our children with down syndrome. why not feauture mothers with just delivered baby and those in pregnancy, and those kids in school, and working.
Your mind is still corrupted by your environment for these kids used to be called as mentally retarded-mongoloids! But recent advances in intervetion and care make them useful and productive members of our society; they can even vote!

Please, rectify your wrong, or we will boycott your program, too! Same with we are doing with Oprah!
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by joseph8221 September 11, 2008 2:41 PM EDT
Those who go for aborting their pregancy of children with down syndrome are committing selective pregnancy, all under the pretext of right of choice! Baloney!

The child life begins with themoment of conception. The child has intra uterine life. He is entitled to, as we have to give him the best in life, and get out and see the wonders of this world!

My son Joseph is ten years of age with down syndrome. He answers the phone in the morning whenever I call my wife.He is doing great in school.He brings priceless joy to us, and our community.
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by joseph8221 September 11, 2008 2:37 PM EDT
Katie, you are mother, but you appeared moronic with your views
as to our feelings when we knew that our children in our wombs have down syndrome? The high rate of percentage of pregnacy being aborted coz of the fear of the unknown given by the doctors
in taking care of the children with special needs.

I knew that my son has down syndrome I did not go for abortion, otherwise it is plain and simple SELECTIVE PREGNACY!

aLL BECAUSE THE CHILD HAS SPECIAL NEEDS, WE HAVE TO ABORT THEM? dONT BE PART OF STUPIDITY!
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by dsadvocate-2009 September 11, 2008 1:42 PM EDT
That was a really bad piece...factually incorrect, biased and just blah...wasn''t she resigning a few months back? The ratings are already in the toilet, someone needs to flush.
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by lindadave1 September 11, 2008 1:09 PM EDT
Katie Couric! Shame on you! "Agonizing choice", "Hopes and dreams shattered". This is irresponsible reporting! Your words are what make expectant parents fear the sweet baby that is growing inside of their mother''s womb! My son who has Down syndrome (Yes, I knew prenatally)is the most beautiful person that I have ever been around. He brings peace, joy and love to those he meets. Isn''t that what our world needs!? Peace. Joy. Love.
Katie, you need to spend time with families who have children with Down syndrome. You will find the challenges are not with the child but with society and the systems that surround the child. Katie, I challege you to report on what can be done to accept and support people who have Down syndrome. There is a very good article that you can do a search for on the internet called "If People with Down Syndrome Ruled the World". You have the responsibility to make your wrong, right. When you educate yourself on Down syndrome you will find there is NEVER really a CHOICE to be made. Choice can be a very bad word and when it comes to ending life, it is the most evil of words.
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by wickerparkbo September 11, 2008 12:38 PM EDT
katie ... when are you going to express publically your justifiable anger in being so outrageously used and misrepresented by the mccain campaign in that offensive commercial?

john mccain''s approve that ad. do you?
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by terria9 September 11, 2008 12:07 PM EDT
This notebook entry on Down syndrome is negative, inaccurate and out of date.

I demand a re-write.
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