Today show stirs emotions with prenatal test for Down syndrome

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 .

Nationwide, some parents of children with Down syndrome 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 Today show 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.

For some parents, the segment's celebratory tone was just too much.

Jennifer Towell’s toddler, Joey, has Down syndrome. He also has undergone heart surgery and two eye surgeries and, like many children with Ds, participates in multiple therapies each week. Jennifer says her family calls him “‘Super Joe,’ for his amazing spirit and positive attitude.”

In a blog post after the show aired, Towell wrote, “As Joey's mom, there is a part of the segment that I just cannot watch without crying and without mourning the way our world celebrates when they find out that their child doesn't have Down syndrome.”

She describes the moment: “Matt Lauer says to the couple, ‘Let's get right to the good news.’ The mom-to-be goes on to say, ‘We are safe. The baby does not have Down syndrome.’

“And then I cried. This is the very reason people fear having a child with Down syndrome. This is the very reason I feared having a son with Down syndrome. The ‘good news’ of this particular segment — which had claimed that the testing would allow the parents to prepare and line up specialists — the ‘good news’ was that their baby did not have Down syndrome.”

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.”

Towell shares that many people felt the segment promoted the MaterniT21 Plus testing instead of presenting a balanced view of what life with a child with Down syndrome is like.

“Many feel that individuals with Ds are devalued by society and that this segment reinforced that sentiment,” Towell explains. “So many moms said they felt the same way I felt when I watched it. Many expressed their disappointment in how most of the media treats individuals with disabilities.”

Towell said she also received comments from people who said their perspective is “[I] can't be offended by every little thing because [I] too would celebrate if [my] child did not have Ds.”

“I think [this particular Today show segment] underscores how powerful language is during a prenatal setting,” says Dr. Brian Skotko, a board-certified medical geneticist and co-director of the Down syndrome program at Massachusetts General Hospital.

“Little words matter. Big words matter. Emphasis matters. Tone matters," he says. "In the prenatal setting, there is no need for professionals to qualify results with ‘good news’ or ‘bad news.’ This inserts their personal beliefs on a couple that might espouse different viewpoints.”

“Research demonstrates that healthcare professionals… often give inaccurate, incomplete and overwhelming negative information about Down syndrome after they received a prenatal diagnosis. The result: Women might have a difficult choice making an informed decision in the setting of biased information.”

In fact, in March 2012, the journal Prenatal Diagnosis reported that fewer women who receive a prenatal diagnosis of Ds are choosing to terminate their pregnancy, and the percentage who do choose termination is estimated at between 60 and 90 percent.

Another mom, Lisa, whose 23-year-old son has Down syndrome, says that while prenatal testing wasn’t available during that pregnancy, she had the procedure chorionic villus sampling done with her daughter years later.

“I still remember the day they called to give us the results,” she shares. "[The doctor said], ‘It's a girl and she does not have Trisomy 21 or any other genetic abnormality.’ For us it was not ‘good news’ it was just ‘news.’

“It saddens me that people would not want to have a son like mine,” Lisa explains. “He is the most loving, compassionate, caring, happiest… young man. I would encourage Matt Lauer to spend time volunteering at a local Special Olympic event or interviewing parents/families with a child with Down syndrome. It may change his view on those test results!”

Dan Niblock has a toddler, Ozzie, with Ds and has been vocal about the use of the R word through his own blog and Today.com.

He says the Today show segment didn’t offend him, but he can understand why it was tough to watch for many parents.

“Statistics show that parents who are told their fetus has Down syndrome often choose to abort the child... Despite the fact that the doctors say [the MaterniT21 test] will just give parents a few extra weeks or months to ‘properly prepare’ for a Ds birth, a more likely outcome is [the] test will… give parents a better chance of avoiding the birth altogether. And that's sad, because many children who could live wonderful and happy lives will be denied the chance to exist at all.”

Dan points out how difficult it is for many parents in the Ds community to watch other parents openly discuss how happy they are to learn that they will not have a child with Ds.

“It's hard to make people understand this point,” he explains, “because parents in the Ds community are labeled as oversensitive whenever they bring up this issue. But… I would argue that they are showing exactly the right amount of sensitivity.

“Many of these parents have traveled a path through fear and sadness and found a place of joy. They don't feel that their kids are undesirable. They wouldn't trade them for anything.

“They want others to understand this, and yet they are constantly battling a public perception that Down syndrome is a horrible thing that is to be avoided at all costs.”

“We received a post-natal diagnosis,” says Sara, mom to a 6-year-old and twins under 1 year old, one of whom has Ds. “In that moment, it was bad news. Sad news. Scary news. Had we received a prenatal diagnosis, we wouldn't have done anything differently — but it still would have been bad news in that moment. I would still have been sad and scared."

Sara continues, “I don't apologize for feeling that way. I grieved the loss of what I thought my son’s future was going to be. I love my Ben and wouldn't change him for the world. I love him for exactly who he is and he is not bad news.

“But for Matt Lauer, who doesn't have a child with Down syndrome, talking to new parents who probably haven't been exposed to Down syndrome and wouldn't choose that for themselves or their unborn child, I understand why they considered it ‘good news.’ For those of us who have children with Ds, we consider them our ‘good news,’ but when I dreamed of kids and my future family, Ds certainly wasn't something I would have chosen.”

“I think people are overreacting,” says Becky, whose 2-year-old grandson has Down syndrome. “I don't find anything wrong with [saying a negative test result for Ds is good news]. If we're all honest, there aren't many [of us], if any, that would say they hope for a positive Down syndrome diagnosis. I find the idea of sharing the details on national TV odd, but to each their own.”

Becky found a silver lining in the much-critiqued segment: “What I did like was the focus they had around education and preparation being the reason for testing. I'd have been very disappointed if their stated reason was to abort.”

Images of the Towell family of Akron, Ohio - Photographer Nat Hansumrittisak

Next up: This writer's opinion >>

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My next sentence may alienate parents and loved ones of children with Down syndrome, but it’s honest and I refuse to believe I’m alone with this concept.

I would give anything to take away my son’s Down syndrome diagnosis. While I have come to accept it, I worry about and even fear its ramifications every day. If possible, I would flip a switch to eliminate Charlie’s diagnosis. Note I said his diagnosis, not Charlie himself. Just that one extra chromosome that I envision as a hurdle he faces every day.

Some parents criticized the Today show for missing an opportunity to educate people on what Ds really is and what it means. Many parents said expectant parents’ fear is a “fear of the unknown.”

I agree the Today show should have included more information about Down syndrome and how accomplished individuals with Ds can be. The show had a tremendous opportunity to show a balanced outcome, and instead, they appeared to promote a prenatal test.

Here’s the thing. When we received our prenatal diagnosis , I was scared by the unknown. When Charlie was born, many of those fears evaporated. Yet, some lingered, and now I’m scared of the known and the unknown.

The truth is, Down syndrome comes with increased risk of many health conditions, including a greater risk of leukemia. Please, tell me what parent welcomes a child’s diagnosis of leukemia? What parent hears her child has a life-threatening heart condition and leaps for joy?

Most children with Down syndrome have low muscle tone, which means some of the simplest accomplishments children make as they develop can take twice, three times or even four times as long for a child with Down syndrome.

My son, Charlie, is 2-1/2 years old and is struggling to walk. My daughter, Mary Emma, is 14 months old and almost running .

When I say I fear the ramifications of Charlie’s Ds diagnosis, please note that’s because we have very clear challenges ahead of us that currently scare the hell out of me. Will my son ever say another word besides, “No?” Will he ever be able to say, “I love you, Mommy?” No one can answer that, and the reality scares me and causes such an ache in my heart.

Now, please note this next truth: I love my children with every fiber of my being. I will do and have done everything possible for them to thrive, be surrounded by love and never want for essentials.

When I hear parents say, “Oh, I wouldn’t change a thing,” I have a hard time believing that’s true. If someone thinks taking away a child’s extra chromosome means taking away that child’s essence, personality, unique and quirky sense of humor and ability to coddle a grin from the sternest of adults, then it seems you are defining your child by that extra chromosome.

I know with complete confidence that, extra chromosome or no extra chromosome, the little boy my husband and I created still would be bright, loving, cheerful, moody, dramatic, stubborn and hysterically funny. That’s because I know that child would still have our genes, and we are all those things.

Down syndrome doesn’t make my child wonderful. Down syndrome presents challenges to my child. Perhaps Down syndrome makes him stronger, emotionally, and perhaps it has made us stronger, emotionally, but that inner strength contrasts with his external, physical challenges. He struggles to walk. He won’t talk. Cognitively, some days I think he is just conning me into thinking he understands what I’m saying .

That’s the essence of my soapbox on the issue. I don’t blame Matt Lauer for a millisecond for referring to a negative prenatal Trisomy test as “good news.” It’s wonderful news, and I’m so happy for that couple.

Their negative result means those two parents are much less likely to have to have weekly, if not daily ultrasounds to monitor their child’s prenatal health .

It’s wonderful news because even if their child turns out to rob banks for a living and use improper grammar, his parents can do the best they can to raise him and not necessarily face the challenge of health issues, developmental delays and, oh yes, the discrimination, judgment and hatred that is lobbed at people with special needs often enough to make me cry myself to sleep every once in a while.

It’s wonderful news because now their child is removed from the statistic of children with special needs who have been sexually abused.

It’s wonderful news because their marriage can now face “normal” rigors and a “standard” risk of divorce, versus parents of a child with special needs who have an increased risk of divorce because parenting a child with special needs is tough. It’s tough, people! Every accomplishment is a fight, and sometimes as humans, we get tired. We get exhausted, in fact.

When a mother has demonstrated the sign for “Mommy” at least 87,432 times in her son’s 36 months of life with no reward, she is drained. Charlie has not mimicked the sign or even tried to whisper, “Ma-ma.”

Rather, feel empathy and realize we as a society have a long way to go in providing the best care for people with disabilities. I rant and rave about the issues my son and my family face because I need you to understand that we as a society have a long way to go. We can do so much better at realizing and supporting the incredible opportunities for progress, growth and accomplishment for people with disabilities.

Now. About Dr. Nancy Snyderman and her use of the term, “Down’s babies.”

Dr. Snyderman. C’mon, now! While your generation may have used many words that today’s society deems disrespectful, I hold you to a much higher standard to be well versed on respectful language.

My son is not a “Down’s baby.” He is a boy. He is a funny, stubborn little boy who happens to have Down syndrome, named for Dr. John Langdon Down, who had the brilliance to identify the third copy of the 21st chromosome and the misfortune of having a depressing last name.

People-first language isn’t about political correctness, it’s about respect. You wouldn’t identify a woman with cancer as “that cancer woman,” would you? Please call my son a boy with Down syndrome. Please decide you owe it to us as a medical expert whose word choices touch millions.

Better yet, please call my son “Charlie.”

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.

“[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?’”

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.”

Images of the Towell family of Akron, Ohio - Photographer Nat Hansumrittisak

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