Some people, like a certain washed-up, no-longer-licensed-to-practice OB, like to throw around a big number, THE big number... 92%. That’s right 92% of women with a prenatal diagnosis of Down syndrome abort their babies. That’s some majority.
Only 8% of women who know they are carrying a baby with Down syndrome choose not to terminate.
But that number, 8%, really isn’t an accurate representation of the percentage of women who are open to the idea of giving birth to a baby with Down syndrome. You see there are a whole bunch of women that decline various types of testing because test results indicating Ds will not alter their plans to have their baby.
I was one of them and I know of many others.
We can assume that if by some fluke they had been prenatally diagnosed, the majority of them would have chosen to continue their pregnancies. These women should be counted as knowingly, willingly, perhaps even welcomingly (made that one up) choosing to give birth to a child with Ds rather than abort it.
If these women were counted what would that do to the 92% number? Would it drop to 90, 85, 80, or even lower? There’s only one way to find out... Ladies, stand up and be counted.
Take the Poll
Over in the right column is a poll question that asks...If (and only if) you had an after delivery diagnosis of Down syndrome, please indicate the level of prenatal testing you received during your pregnancy. (If you had non-invasive testing and followed up with the CVS or an amnio that returned incorrect results, please select the CVS/amnio option). Also, an ultrasound, while a nice view of the baby, only counts as a test if you did the 20-week 3D check-for-Ds ultrasound or any other 3D ultrasound that was specifically performed to look for Ds markers.
Written by ds.mama
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My OB actually "ruled out" Down Syndrome during our most thorough ultrasound. That was literally what he said. I think he was even more shocked than we were when we got our post-natal diagnosis! :)
ReplyDeleteI would love to see the stats about how many people have additional children after having a child with DS, and how often a repeat occurrence of the diagnosis takes place. (Doctors say there is a 1% chance of it happening again, but I wonder what happens in real life)
Woops - I voted as declining all testing, but did in fact have the 20 week u/s with no significant issues found. No Ds, no heart issues...thus the surprise at birth!! :)
ReplyDeleteI had 1 in 16 odds. Didn't choose to test further. My choice was faith and love. And it was my good fortune that I was the ONE.
ReplyDeleteHi Laurie,
ReplyDeleteI don't think the 20 week ultrasound (unless it is the super duper 3d one) really counts as a test. But if people feel that they had it done as a test should vote that way. (btw, my ordinary 20 week u/s showed nothing odd as well. I didn't get it as a Ds scan. I did have a 28 3d u/s that picked up a heart defect, but I declined to get a test.)
I've always thought that statistic was a little skewed since it didn't include - as you said - those of us who either declined testing, or didn't follow up with invasive testing - so choosing in fact to have our babies. Although the 90+% for those who did have the dx confirmed is still very sad.
ReplyDeleteI had an AFP that gave me 1 in 88 chance, had the level II u/s that really had no markers except that she was measuring on the smaller side. Declined amnio.
As to Mers comment - we did go on to have another child after our child w/Ds. I did have the early screening done again - only because I knew I would get a follow up level II u/s and wanted to see that baby in 3D too :)
We fall into that percentage of parents who declined prenatal testing because the results would have made no difference. For me, NOT knowing that my son had Down syndrome really was better. I would have spent my pregnancy worrying about something that has turned out to be such a blessing.
ReplyDeleteDoes anyone know where the 92% number came from? Is it an old test or statistically significant? I am amazed that the "90%" or the more precise "92%" number is often cited - is it accurate????
ReplyDeleteNo idea where it came from. I have not been able to find a study or white paper that started it. It can't be accurate because nobody asked us anything about prenatal testing or decisions we had or had not made when our child was born and I doubt anyone out here was asked. No one seems to be tracking that data.
ReplyDeleteI seem to recall a NYT article being quoted to get that 90% figure. I've seen some more info somewhere in the past two years, but the location is escaping me at the moment.
ReplyDeleteThere is a study that focused on births in England and Wales published in 2008... www.down-syndrome.org/editorials/2087. This study also assumes the 90% termination rate. I think there is almost an "urban myth" of termination on prenatal diagnosis. If anyone could find the date and the number of cases involved in the study, it would be helpful.
ReplyDeleteDoing quick search through internet.. wikipedia, while not the most reliable source, does report that "A 2002 literature REVIEW of elective abortion rates found that 91-93% of pregnancies in the U.S. were terminated". Twenty papers were found that met the inclusion material... this does not sound very scientific to me.
ReplyDeleteThe most thorough exam of numbers is the National Down's Syndrome Cytogenic Register annual report which can be found at www.wolfson.qmul.ac.uk/ndserv/reports/NDSCR report06.pdf.
It is reported that there were in 1877 diagnosis of down syndrome in in 2006 with 60% diagnosed prenatally. There were 749 live births, 767 terminations, 68 miscarriages, and 293 UNACCOUNTED for. hmmm.
It appears that the 1877 diagnosis number is based on live births plus the number of those diagnosed prenatally. This is sketchy science because there is no miscarriage and unaccounted for in the live birth column. If we subtract the miscarriage and the unaccounted numbers it looks like the termination rate is about 52%. But again this number is not right because there is half the information missing.
Anyways, the number based on this report do not add up to 90%, or the more precise 92%, at all. And I do not think that a literature review is very scientific...
It is not right. In discussing our children these high termination rates are almost always reported in the press. And they do not appear accurate, AT ALL!
Hi everyone - I'm finding this all very intriguing. There's a distinct possibility that we have all been blindly accepting an inaccurate statistic. That certainly wouldn't shock me, but if it's true, it's really a shame. If we can actually push this issue and get someone, somewhere to publish a newer and more accurate study, well... that would be incredible.
ReplyDeleteI am going to go out on a limb here and say that this recent emphasis in our discussions on termination after a prenatal diagnosis is starting to make me uncomfortable. I love my son more than anything in the world, but I do think that termination is a valid choice that should be respected. I completely understand everyone's concerns, but I am starting to feel like I will not be accepted as part of this "club" (parents of kids with Down syndrome) if I express this.
ReplyDeleteI recently read a study from Australia that said that the incidence of births of children with Down syndrome has actually increased recently, partly because of higher fertility rates in older women, but also in younger age groups. Our poll also reflects that prenatal testing is not leading to the disappearance of people with Down syndrome.
So, I would like to make a plea that we shift focus to things we can do to improve the lives of our kids and everyone who is living with Down syndrome now, and who will be in the future. There are other ways besides preventing abortions. I'm sorry I can't suggest a new mission now, but I will keep my eyes open.
Hey Susan - I understand your concern. I don't consider us to be flag-waving pro-lifers. I think the reason you are seeing this recent emphasis is in response to the the Skeptical OB's most recent writings. A lot of people in Oz Squad feel like we are being provoked, intentionally, by her posts, and that has led to a flurry of abortion posts. I don't think you risk being ostracized for your opinion, and for the record I am pro-choice. But it certainly is an important issue, and I do think this is a fine forum for discussing the matter.
ReplyDeleteThanks, Dan. I agree, and I think I wish I had never heard of the Skeptical OB!
ReplyDeleteI, too, am pro-choice. However, I am tired of having a bogus number thrown around to "prove" that 92% of women wouldn't give birth to my child when that is just not the case. And I feel that a number like that is also subtle pressure on women to choose abortion. If they do, they do... their choice.
ReplyDeleteI think that getting more accurate numbers will improve cultural perceptions of our children. And that will significantly impact the quality of our children's lives.
I do not think this is a discussion about choice. It is about accuracy in the numbers "90%" or "92%" because these numbers are routinely used by medical practitioners and the press.
ReplyDeleteAre the numbers accurate? Where did they come from?
Oops-- I made a mistake and checked no prenatal testing. I chose to decline all prenatal testing BUT had an ultra sound almost every month because of a ovarian cyst during a previous pregnancy. No markers for DS were found on any of the ultrasounds. They even missed the 3 holes and two damaged valves in Joe's heart that would require open heart surgery after birth.
ReplyDeleteMy wife was at risk after a car accident so she had a super top-of-the-line ultra sound and nothing odd showed up.
ReplyDeleteThe 92% rate is just a guess. There is no law that requires a woman to explain why she wants an abortion. There is no law that a woman report that she is having an abortion to the doctor who gave her the diagnosis of Ds.
ReplyDeleteAfter testing came back with an increased risk for DS, I did have an amnio. My amnio did come back that my baby did in fact have DS. I spent the rest of my pregnancy reading books like Gifts etc. When my beautiful son Mateo was born it was a celebtation! I adore my son and would not change a thing. So, yes I chose to participate in invasive testing, and at the end of the road have a wonderful 16 month old son!
ReplyDelete