I spent a lot of time over the past week mulling what I would say about today’s release of MaterniT21 ™, the new prenatal blood test to detect Down syndrome. Ultimately, I decided to say very little at all. The test isn’t bad or good – it merely provides information. What people do with the information is of greater concern.
I’ve provided a number of links to articles on the subject for your reading (bold emphasis mine).
Sequenom Announces Launch of MaterniT21 ™ Noninvasive Prenatal Test for Down Syndrome (Sequenom Press Release)
Sequenom’s Test for Down Syndrome Raises Hopes and Questions (NY Times/Andrew Pollack)
Similar techniques are already being used to determine the gender of the fetus and paternity. Some people worry that use of such tests early will lead to more abortion of fetuses with minor abnormalities, the wrong sex or an undesired father.
Sequenom could also face heightened skepticism because of its past problems. The company was preparing to introduce another prenatal Down syndrome test in 2009 when it abruptly announced that the data it had promoted to investors could no longer be trusted.
Safer Down Syndrome Test Hits Market Monday (ABC News/Katie Moisse)
In a Sequenom-sponsored study, MaterniT21 spotted 209 of 212 Down syndrome cases — a feat researchers say would save lives.
It is unseemly to be nostalgic for an era where a small percentage of women end up having children they wouldn’t have chosen to bear because the critical test was too dangerous, or because they’re put off by the prospect of a later-term abortion when they would have been okay with an earlier one.
The fact that many women don’t want to raise a child with Down Syndrome does not imply that a life with Down Syndrome is not worth living. Some women who are carrying twins or triplets choose to selectively abort because they are not up to the task of raising two or three babies at once. This says nothing about whether the lives of twins or triplets are worth living.
Seeing the Joy of Down Syndrome (Shine Parenting)
The first two comments in the feed at the time I drafted this post:
Keri: I have a 6 yr old son with DS–my first born and I thought my life was over the moment we found out. I had all the dreams any parent has for their child and thought those were all gone at the moment. Fast forward 6 years and our life is SO different than I thought it would be. There are challenges and moments when I wish I didn’t have to deal with the extra stuff it brings, but I couldn’t imagine not having him. He’s a sweet soul who has to work 100 times harder than any of us have ever had to do. Bottom line is he’s mine, whether I asked for it or not and couldn’t imagine it any other way.
Ggonza: sorry, just not a life I want for my family or my kid. Yes, they are amazing people, but you can never know if your child with DS will be high or low functioning and I have met both. Not cute when they are 30 and cannot feed themselves, and the idea of being 60 and still need to be a mommy to a 10 year old who is biologically 30, not going to work for me. is that selfish maybe, but I have that choice…and if they are not high functioning and you are not wealthy enough to support them while you retire (if you ever get the chance to) or upon their death, than what? So sad, but I just would never do it. Lots of respect to those that do, i cannot imagine what you must go though everyday.
Parents of Children with Down Syndrome Speak Out (Kansas City Star/Kim Hone-McMahan)
Dr. Harriet Feick, a neonatologist at Akron Children’s Hospital, broke the news to the Wilkinsons. Meghan said the thing she remembers most is that the doctor didn’t apologize.
“She didn’t say ‘I’m sorry’ because there is nothing sorry about this sweet face,” she said, nudging one of the boys who was sitting between her and Matt in their Cuyahoga Falls, Ohio, home.
Being upfront from the start with parents is important, Feick explained.
“Sometimes they hate you forever because, for some families, it’s not what they want to hear. And it is so upsetting … that they have to be mad at someone and it’s often the person who first delivers the news,” the doctor said.
But in time, Feick added, she is usually able to win them over. And it’s fascinating, she said, to watch a family go from devastation when the baby is born to undying love by the time they leave the hospital.
New Test Can Advance Preparation for Down Syndrome (Cincinnati.com/Jana Surace)
Unfortunately, most of the buzz is about how this will be a means of “preventing” Down syndrome.
I fully support a family’s right to get information when pregnant. If only the test results came with an accurate depiction of what life would be like with a child who has Down syndrome. When the results are given with no updated information about what it is they are facing, I think I speak for most parents of kids with Down syndrome when I say, this could be very dangerous.
New Prenatal Testing: Are You Ready? (DownSyndromePregnancy.org)
Don’t waste time trying to stop the train. The testing is coming, and expectant parents worried about the health of a baby will take the test. If your efforts lie in fighting against the testing, or convincing people not to test, most of your efforts will be wasted.
For what I’ve written previously on this subject, read my thoughts on prenatal testing here.