”Let's get right to the good news”
Joey Towell

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 with Down 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 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.

Parents bristle at couple's open relief

Joey Towell and brother Tommy

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.”

"There is a part of the segment that I just cannot watch without crying... "

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.”

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.”

Advertisement for prenatal test?

Jennifer Towell and family

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.”

Importance of word choice

“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.

"In the prenatal setting, there is no need for professionals to qualify results with 'good news' or 'bad news.'"

“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.

Lisa’s story

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 (CVS) 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!”

Some parents empathize but aren't offended

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."

“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.”

”It was bad news”

“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.”

People are ”overreacting”

“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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Tags: prenatal tests

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Comments

Comments on "Today show stirs emotions with prenatal test for Down syndrome"

Tara September 23, 2013 | 6:23 AM

My daughter who is blessed with down syndrome is the joy if my life, they offered abortion, obviously, I said no. She makes me realize how precious life is!

rose April 12, 2013 | 4:24 AM

One question - who thinks the term / name of 'Downs Syndrome' should be changed to something more uplifting and reflects the more up to date and modern times that we share with Downs Syndrome children and adults. I have a two year old little boy and feel I am so pleased he is born in this day and age (although we still have a lot to learn socially) than back in the 50's, 60's, 70's even 80's. If so what are your suggestions?

Maureen Wallace February 06, 2013 | 10:43 AM

TUC, thanks for sharing your perspective. I agree with you about the callouts (which, coincidentally, I didn't choose). I did write all the subheads, and I stand behind those. I feel together they provide a balanced synopsis of the article, which reflects many different views. I would like to clarify one thing. Wanting to take away my son's Ds does NOT mean I want to take away my son. I have said it before and I'll say it again: I could not possibly love this child or his sister anymore than I do. I want the best, and I wish I could make life so much easier for him. We actually chose my daughter's name because we knew it would be somewhat easier for him to say. That doesn't mean I'm diminishing my expectations. I have compared it to teaching a child to brush his teeth. I may give him a stepstool to better reach the sink. Is that spoiling him or removing the expectation that he won't one day reach it on his own? I don't think so. And if one day he is able to say the most complex of names, no one will cheer louder than I. Thank you again to everyone who has contributed to this excellent discussion!

TUC February 06, 2013 | 7:43 AM

I think that parents bristled over this not because the couple was relieved that their child did not have Down syndrome but rather because the way the information was discussed infers that the opposite would have been "bad news" and that the couple would not have been "safe" from Ds. Imagine if the couple on Matt Lauer's show was going to have a baby with Ds, would that part of the conversation have been, "So let's get right to the bad news" with the couple responding, "Yeah, we aren't safe... our baby has Down syndrome." I doubt it. It also concerns me that by page two most people are probably skimming more than reading and the headlines and callouts alone reinforce the message that having a child with Down syndrome is a bad thing and something to fear, although I know that is not the message the author intended.

Maureen Wallace February 05, 2013 | 6:46 PM

Thank you to everyone who has commented and contributed to this conversation. Tonight, a friend shared with me this column from a grandmother who wrote about her graddaughter, Lucy (link below). She, like several of the comments here following my story, gave me much broader perspective and also hope that there will come a time when I join the camp of "I wouldn't change a thing." It seems my current perspective trends with younger parents - parents whose child with Ds is still a toddler, for example. One comment that bothers me... Sam, I don't mean to judge anyone, and certainly not people with Down syndrome. Each person is entitled to his or her own opinion, and I shared mine knowing it would not be popular. I can't imagine life without our Charlie. If someone offered me the choice to take away his Down syndrome with the reassurance that nothing else would change about him, I would choose THAT door. Thanks again for all for such thoughtful and respectful comments! The more we talk and share ideas, the more we can help society accept people with differences, like our children. http://www.boston/news/local/massachusetts/2013/01/27/pictures-can-capture-what-love-sees/EoEdeeeOGLhKClh5OjbZ7L/story.html

Mike Sullivan February 05, 2013 | 5:18 PM

These negative attitudes towards those with Down syndrome are a reflection of a broken society that fails to recognise the inherent dignity of all human life. Such views simply reflect the attitude of those expressing them, they have nothing to do with the actual person concerned. Parents seem to forget that his isn't about them, it's about promoting a society that just accepts their children for who they are. People with Down syndrome just need acceptance, not judgement.

Glenice February 05, 2013 | 4:47 PM

Sara, No one chooses down syndrome just as no one chooses for their child to be injured or even Killed in an car accident or their child to have cancer or a child to pass away when they are young for anything else but that is is life. With that said it is dissapointing this segment was even put on tv. My 2nd son born 13 months ago with ds is the love of our lives. I had a small non common marKer when I had my morph scan but chose not to do any testing for DS or CF as he was my son and he was going to be loved no matter what.

Sam Paior February 05, 2013 | 4:07 PM

Hi Maureen, Thanks for your blog. I have a son with Down syndrome who turns 13 in two weeks. When Ben was younger, I would follow emails lists for families with a child with Down syndrome, and whenever the discussion came up of the potential for a genuine "cure" it was a clanger of a discussion. Inevitably the conversation turned into the younger parents saying "I would take away his DS in a heartbeat", so the parents of older kids saying "I would take away all the health concerns, but if I got rid of her DS, it would take away who she is - I wouldn't do it!". I was *firmly* in the younger parent camp,a nd thought the rest were, quite frankly, insane to not want to take away a "world of pain and rejection" for their children. I loved my little man with every fibre of my being, but I hated the DS. But guess what? I flipped. A few years ago I realised that my Ben is an important, contributing member of our society. That if we took away his DS, he wouldn't be Ben any longer. So please, please reserve your judgement for the future, and don't allow any potential pride to let you change your mind. I did. all the best

Louis Friedman February 05, 2013 | 7:05 AM

My ten year old son Isaac has Down syndrome. He is the greatest thing that ever happened to me. There is no way Matt Lauer - or any other shallow pop cultural figure - could understand.

Mike Sullivan February 04, 2013 | 10:14 PM

Any suggestions that Down syndrome is negative is sort of problamatic, in that it doesn't aknowledge full acceptance for the person as they are. Saying that it is good news that a prenatal diagnosis is negative for Down syndrome is devaluing the lives of people with Down syndrome, as is saying that one wishes another doesn't have it. All people with Down syndrome need is acceptance for who they are, not what any else thinks is right for them. Just love every child for who they are and get over the labels.

Maureen Wallace February 04, 2013 | 7:48 PM

Hi, Taina. Thank you for taking the time to share your inspiring story! I invite you to re-read my article. I've never presumed to speak for all parents of children with Ds; in fact, I worked very hard to ensure many opinions were represented in this piece. The opinions expressed are my own (well, and actually my husband agrees). We love our son beyond words (although I often try to put it into words) and want only the best for him. He and his sister will always be my proudest accomplishments. PS - I'm also pro-choice. We chose to have our beautiful baby (actually, it wasn't even a choice - we never even considered termination, but I would never try to dictate that decision for someone else), and I wouldn't change any of our decisions. We have a wonderful life and two incredible kids. Life is good!

Taina Karru-Olsen February 04, 2013 | 6:56 PM

Maureen, although I appreciate your honesty, frankly, I have to say that I'm a little offended by your assumption that your feelings as a parent to a child with Ds are shared by us all. I too am one of those parents who would not remove my daughter's Down syndrome if that magic wand appeared. I'm also one of the parents who has a reality to back this claim up with. Atheist and extremely pro-choice, we got our positive diagnosis at 13 weeks of pregnancy, not after trying for a long time (actually, trying once was all it took), and not desperate for a child, any child, either. To us having a child with Down syndrome was a game changer, but not something that brought our world crashing down. Today, we're the extremely proud parents of a 16-month-old and living exactly the life we always envisioned. We're a family of three with a daughter who can do whatever she wishes when she gets to that point and be the person her genes and her environment (our more or less mediocre parenting skills) mold her into. That's all that we ever imagined.

Maureen Wallace February 04, 2013 | 1:30 PM

Lisa, you are an incredible mom! What a beautiful story and thank you for sharing. While we disagree on some things, I know we both agree that we are so very lucky to have our beautiful children in our lives. I hope that common bond will help so many in the Down syndrome community support each other and celebrate our differences - much like our children's! Thank you again for sharing... I am grateful.

Lisa Morguess February 04, 2013 | 12:23 PM

Great article, Maureen. I appreciate your honesty. I guess I am one of those parents who says she wouldn't change her child, wouldn't take away his Down syndrome. I'm not one who feels that Down syndrome is a blessing, and I don't savor the challenges and health issues/risks that go along with Ds. And although I don't think I define Finn, my four-year old son, by his Down syndrome, it is difficult for me to not see Down syndrome as very much a part of his identity. Of course, there is no way to know, but it seems to me that he WOULD be a different little boy if he didn't have Ds, and because I love the Finn that he is, I can't separate him from Ds. That is not to say that his future doesn't scare the crap out of me at times, or even that I rejoice in the challenges he and we face because of his Ds - no. I have seven kids, and I think that's given me a certain perspective, a realization that nobody goes through life without challenge, without battles to fight. If Finn didn't have Ds, he still wouldn't be guaranteed an easy life, or good health, or anything else. This is the hand he was dealt, and although I don't feel like we are just making the best of a bad situation, I do feel that you play the hand you're dealt - that's life. A side note: I found myself very unexpectedly pregnant last year at the age of 44, when my risk of having a baby with Ds or some other anomaly was sky-high - and I already had a kid with Ds. I chose not to do any prenatal testing. While I do see the value in being prepared, it wasn't enough to sway me. I had a mid-pregnancy anatomical ultrasound to rule out any obvious anomalies that would preclude the home birth I planned to have, and that was it. We did not find out about Finn's Ds until after he was born, and although it shook us to our cores, I'm extremely grateful that it happened that way - that I had a live, flesh and blood baby in my arms when I got the news, and not just some scary diagnosis. If this next baby was going to have Ds or anything else, I wanted to find out the same way. She was born at home last June, and the first thing my midwife did was show me the creases in her palms, because Finn has the single crease common with Ds. I wouldn't even look at her palms. I just told my midwife, "I don't care, I don't care, I just care that I have my baby."

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