Wednesday, February 6, 2013

The Rest of the Story: An Article Examining All Sides of The Today Show Segment About Prenatal Testing

Maureen Wallace is an excellent writer over at  Her article "Parents Criticize Word Choice" examines various view points regarding The Today Show segment I wrote about here. She has a number of excellent articles about being the parent of a child with special needs.
Joey Towell


The Today show recently featured an expecting couple who shared results after taking the controversial MaterniT21 PLUS prenatal test, which can detect genetic abnormalities at just 10 weeks of pregnancy.
With relief and joy, they reported a negative test result, and then live on-air, Today revealed the sex of the couple's unborn baby (it's a boy).
About the test:
The MaterniT21 PLUS test, developed by Sequenom CMM, is a laboratory-developed test that analyzes circulating cell-free DNA extracted from the expecting mother’s blood sample. The test detects the relative amount of 21, 18, 13 and Y chromosomal material, which means the test can detect Trisomy 21, 18 and 13.
Nationwide, some parents of children withDown syndrome (Ds; Trisomy 21) reacted passionately to the segment, criticizing host Matt Lauer’s choice of words by referring to the negative test result as “good news.”
Parents also accused Dr. Nancy Snyderman, chief medical editor for NBC News and a Todayshow regular, of portraying life as a parent of a child with Ds as something to fear.
Snyderman also used the term, “Down’s babies.” More on that later.

While my post discusses the pain I experienced listening to Matt Lauer and a couple discuss the "good news" that their MaterniT-21 Plus test showed their baby does not have Down syndrome, Maureen's article describes her personal opinion that she would take her son Charlie's Down syndrome away if she could and how she was not offended by the celebration of the baby not having Down syndrome. And her reasons are completely legitimate.  She argues that without Down syndrome her child would be much less likely to develop childhood leukemia (a major fear deep in the hearts of every parent who has a child with DS), would be much less likely to have cognitive challenges or as many physical challenges. As Maureen points out, that extra chromosome, can present extra challenges that not every parent would necessarily celebrate. 

Sunday night I had an email from her asking me about my post and posing some questions to me.  While we do not share the same response to the segment, what was incredible was getting to virtually meet another mom in the Down syndrome club and learn about some wonderful new resources and to above all else-- stick together. That was one of our many emails back and forth. We agreed to disagree on some things, but to stick together in this world we navigate. If you are in the T21 club, then you know what the parents are like. The parents are incredible-- at least all the ones I have met and know both in person and online. Are there exceptions to this rule? Of course, but overall the parents, the advocacy efforts, the desire to help every child become their best is absolutely overwhelmingly incredible. 

Below are the questions from Maureen and my responses in her article:

  • How has the response been to your post?
After writing her passionate response, Towell’s blog went viral. While a typical day draws between 75 and 100 visits to her blog, her post about the Today show drew 10,000 visits, and responses began to pour in.
“I have heard from parents, grandparents and even individuals with autism and Down syndrome," she says. "Most of the responses have been very positive and most people felt that the segment was insensitive and did not provide accurate or complete information about the testing.
  • Do you wish you'd said anything differently?
“[The fact that] a person has Down syndrome or any disability does not take away from their ability to understand what people are saying about them,” Towell points out.

Instead of Matt Lauer beginning the story with, “Let’s get to the good news,” Towell says, “It would have been so easy for [him] to say to the family, ‘What were the results of your testing?’”
  • What would you like to say to the Today Show about future segments on issues affecting families of children with Down syndrome?
Jennifer Towell and son Joey
What’s next? Blogger and mom Jennifer Towell offers some specific suggestions for future news coverage on the Today show:
  • Provide an accurate and complete report that shows both sides of the issue.
  • Consult with parents of children with Down syndrome as well as older individuals with Down syndrome.
  • Show people with Down syndrome the same respect you would any other individual.
  • Recognize that individuals with Down syndrome have feelings. They are television viewers, consumers and valued members of families and societies.

Dr. Skotko agrees. “Matt Lauer could have struck a more neutral tone by just asking, ‘The results came back negative for Down syndrome. How does this make you feel?’”
“Medical professionals practice hard to strike a neutral tone, but medicine is as much of an art, as it is a science,” Dr. Skotko points out. “So, too, is journalism.”

I hope you enjoy Maureen's thorough look at this segment on The Today Show. I have enjoyed hearing various points of view and opinions about how the prenatal test was handled and I hope that perhaps it has helped some families to think about these types of questions and issues and to search their hearts long before they decide they might like to become parents. 

For me it has also raised the following question that I have thought about before, but have never truly examined....If you could take away Down syndrome from your child's life, would you?

Does your child have Down syndrome? A different disability? Would you take that away if you could? It's a loaded and complicated question that I will be wrestling with so that I can write about it.  In the meantime, if you have a thought on that topic, please leave a comment or send me an email-- I would love to hear your stories and opinions.

In the meantime, my sister has been tweeting, emailing and calling up The Today Show like nobody's business asking them to PLEASE get a group of moms, family members and individuals with Down syndrome to do as Paul Harvey used to say, tell the rest of the story. 

Will she be successful? I don't know, but I do hope that at some point The Today Show takes a look at how they covered this prenatal test and how they can do a better job in the future.


  1. It is a wonderful thing to have such an open dialogue about Down syndrome; and really the ultimate goal for us parents.
    I can actually say that I have thought about the question of taking away my son's Down syndrome. I would not. Down syndrome is who he is and it is apart of him as much as it is apart of our family. I wouldnt take a away my daughter's beautiful brown eyes, our my other daughters determination; all things they were born with. I happen to think we won the lottery with my having an extra chromosome. I can tell you that he brightens every room he steps in, every wave he gives a stranger and the hugs he shares with people that need it the most (the same people you or I would just walk right past without a second thought.)

    1. You are so right, Brittany! The more we can all discuss and share thoughts and ideas in a safe and accepting environment the better we will be able to help our kids and our families. Having met your beautiful son (and daughters)-- I also can't imagine him any other way. You put it so eloquently-- you wouldn't take away your daughter's beautiful brown eyes or determination-- love you!! Thank you again for sharing!!

  2. My first time here, but I just wanted to say I read this post and the one regarding your reaction to the Today Show. I love what you have to say, and I hope that something positive does come from the airing of that show (like you fighting harder for acceptance). I didn't see it, but I can imagine my reaction being very similar.

    Thank you for sharing.

    1. Thank you so much, Kel! Thank you for reading and for sharing your thoughts!!!

  3. Spot on. That would be awesome if they would do that segment. I asked a mom who adopted a severely neglected 9 year old from Bulgaria if she ever got angry about how her daughter was treated and wondered what could have been had she not been so abused and neglected. Her response was on the lines of what would be the point? It is the way it is. That's kind of how I feel about the question, "woukd I take away Down syndrome?" What's the point of thinking of it that way. She does have Down syndrome. Always will. Why not just celebrate it and celebrate her.

    1. That is kind of where I think I stand- I don't typically like to even think about things that are not possible and would never happen, so it's an interesting question. I also think that God has a better plan than I could come up with. :-)

  4. I don't know if we'd take away his Down's syndrome or not. That's a thought provoking question.

    On one hand, nobody wants their child to have the (understatement) hard life that the syndrome brings, even in its varying degrees.

    On the other hand, the people I have met in my life with severely limiting medical conditions are some of the most inspiring people I've ever met, and add something to the world that so-called "able-bodied" people don't (or won't).

    One of my clients had myasthenia gravis, another has primary lateral sclerosis PLS, others are multiple amputees. I look to them daily for inspiration and motivation in the face of adversity.

    I didn't see the Today show at issue, and we are extremely new members in the T21 "Club"...that said, what really matters to me is playing the hand we are dealt the best we can, while doing all I can to make sure that the deck isn't stacked against my Little Bird.

    Great blog...thanks for your post!!


    1. LBD- thank you so much for your thoughts and comments. I agree-- differently abled people add something to the world that "able-bodied" people don't-- such a great point! Some parents were offended by the segment and some were not. We appreciate hearing from you and hearing your view point! Enjoy your Little Bird!!!

  5. Hi Jen,
    I am writing a whole blog post about would I take the Ds away because you got me thinking. Well, I said I wasn't going to think about it because it wouldn't change anything and yet, I am thinking about it! I will email you my thoughts when I get the whole thing written.

    1. I felt the same way and then everyone else's thoughts on the topic also got me thinking. It seems that many parents would not want to change their child, but would definitely like to take away the health issues. Am excited to hear your thoughts!


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