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 Sheknows.com.  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.

”Let's get right to the good news” PARENTS CRITICIZE WORD CHOICE 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?

Blog goes viral

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?

Advice for Today show

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.