More women than ever are aborting pregnancies positive for Down syndrome. And, at the same time, more women than ever are choosing to continue a pregnancy positive for Down syndrome.
The most recent study on prenatal testing in the United States estimates that almost 75% of all pregnancies undergo prenatal screening for Down syndrome. This is an increase from just 25% in the 1980’s and 50% in the 1990’s. This increase in the number of women having prenatal testing for Down syndrome means two opposing decisions are being made more than ever: to abort or to continue a pregnancy positive for Down syndrome.
More selective abortions for Down syndrome than ever
The traditionally quoted 90% termination rate dates back to studies that were done in the late 1980’s. At that time, professional obstetric and genetic practice guidelines recommended that only women 35 years or older be offered prenatal testing. Given that pregnancies to women of that age or older, at that time, represented a significant minority, then it’s not surprising that only 25% of all pregnancies had prenatal screening for Down syndrome in the 1980’s.
Applying those two percentages provides an estimate of how many selective abortions occurred in any given year when the termination rate was 90%.
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According to the study by Egan et al., represented in the graph above, there were around 5,000 pregnancies carrying a child with Down syndrome in 1988. With 25% of all pregnancies undergoing prenatal screening, then 1,250 of the Down syndrome pregnancies underwent prenatal screening. If every one of those mothers who received a screen positive went on to have diagnostic testing and 90% terminated after a diagnosis, then that would mean there were 1,125 selective abortions out of 5,000 total pregnancies.
Now, fast forward to present day, when almost 75% of pregnancies undergo prenatal screening for Down syndrome and the termination rate is estimated to be 75%. According to Egan et al., there are about 8,000 Down syndrome pregnancies each year now. With the estimated screen rate of 72%, then, 5,760 of those Down syndrome pregnancies would undergo prenatal screening. And, if each screen positive had diagnostic testing, a 75% termination rate means 4,320 of those pregnancies were aborted.
So, you see, a lower termination rate of 75% versus 90% actually results in 3,195 more abortions–a 380% increase in the number of selective abortions due to the increase in the number of women undergoing prenatal screening.
But it also means something else.
More women than ever are choosing to have a child with Down syndrome
The focus of columns and arguments about prenatal testing for Down syndrome tends to be on the high number of abortions following prenatal testing. Doing so misses another key decision that women are making: continuing pregnancies positive for Down syndrome.
Using the same numbers as above, consider that in 1980’s there were 1,125 abortions out of a total of 5,000 Down syndrome pregnancies in any given year. Of those 5,000, 1,250 had prenatal screening. So, 125 mothers chose to continue their pregnancies that they had learned prenatally might be positive for Down syndrome.
Again, fast forward to present day, where almost 75% of all pregnancies have prenatal screening for Down syndrome. While 75% of those that are diagnosed with Down syndrome terminate, that means 25% will decide to continue. Working with the same figures above, of the 5,760 pregnancies carrying a child with Down syndrome each year that received a screen positive result, 25% of those chose to continue their pregnancy. That means 1,440 moms chose to continue their pregnancies. Compared to the 125 who made that same decision in a given year in the 1980’s, that means 1,315 more women that chose to continue after a prenatal test result for Down syndrome–a 1,150% increase in the number of mothers choosing to continue their pregnancies positive for Down syndrome.
More support needed than ever
What this all really means, though, is that there are more moms than ever receiving news prenatally that they did not expect, that they do not understand completely, and that need support and care while they make their decision. And, of those moms now undergoing prenatal testing, while more are choosing to terminate than ever before, so, too, are there more moms than ever choosing to have a child with Down syndrome.
THANK YOU! I calculate some of these stats but have not presented them in an annualized clear context.
One item that would be helpful to add is the reason for the increased number of estimated births – women having children at older ages. Older women have more children with DS.
A chart showing the average maternal age increases compared to the higher percentage of DS live births would be useful to defray the uninformed from assuming there is an increase for an environmental reason or who knows what.
Just more eggs with the genes that are stir enough to produce live births (as opposed to younger parents with other unique egg configurations that are not as hearty and miscarriage.)
A good point–one that was in the original draft and I mistakenly took it out. I will update the article.
As worried as I am about all the moms who are faced with a prernatal diagnosis of Down syndrome and choose to abort, it IS gratifying to note that more women choose to give birth than twenty years ago. We are having a positive effect, and the need for information is more urgent than ever. I will be using this article in two talks I am giving during October, Down Syndrome Awareness Month, here in CT.
Thanks, Leticia. I’m glad this was helpful.
Acceptance is the key, not choice.
Ah, but “acceptance” necessarily means there is another option of not acceptance, which then means a choice is being made, even in choosing acceptance.
No, if there is acceptance on receiving a diagnosis, then choice doesn’t come into it. Accepting involves presence and being with things as they are. Choice involves ego to control an outcome. Acceptance has no choice or control attached to it. So, acceptance is the key,
So Sayeth……..
The one statistic you chose to leave out is the percent of women who are faced with terminating a dying infant in their womb. Those babies that will never make it. What is it? 80 percent, or is it 90? I guess it depends whose statistics you trust.
“Acceptance”? It appears to me you are making a personal, prejudicial statement. Acceptance does require a choice….you choose not to do anything.
why bother to test? if acceptance is the path then why test? or were there some other abnormalities that these parents would not accept?
If testing reveals prenatally that the baby has Down Syndrome, The National Down Syndrome Adoption Network is a resource for parents that do not wish to terminate, but instead decide that an adoptive placement is their choice. There are many families that wait in every state for the chance to adopt a baby that has Trisomy 21. Please, consider this option!! Life is the best option always.
Thank you, Esther. I feature the NDSAN at this post.
I have been given a high risk (1:74 age 33 16 weeks pregnant at the time). I never thought once to terminate I thought selfishly about how would this change my life. After letting it sink in I did a level 2 ultrasound found one soft marker. The genetic counselor said it was so common in all pregnancy she was not worried. Well she may not be but I am. I have 8 kids already and a 9th baby is overwhelming along with if he will have special needs. I will research and prepare. I decided no more tests when during that ultrasound his hand appeared with a clear thumbs up and it was my sign of mom it’s all good no matter what. I hope more woman realize this is not a death sentence and try other options all lives special needs or not mean something to someone
Stacy–As you have decided to continue, and I’m presuming your increased chance is for Down syndrome, I would recommend the resource downsyndromepregnancy.org. It recently revamped its website and has a downloadable book for moms who have decided to continue. Professional guidelines also recognize the help that can be provided by contacting your local support group. You can find links to DSP and to find your local support group at the Prenatal Resources tab. I hope your pregnancy goes well.
Acceptance is the key, as someone else pointed out. Having a baby/child with Ds is not about all that is written. Each person is a life, not something that is “labeled”.
My beautiful 3 1/2 year old daughter is amazing; beautiful, smart, funny, and extremely special (not because of the extra X). My journey with her has been nothing that was written down about Ds. She has her own challenges, but so do most people!!! This article is so well written. Thank you.
Thank you, Minnie. I agree: my daughter has been nothing that was written down about Down syndrome.