Sunday, May 27, 2012

What Exactly Is the Termination Rate For Babies With Down Syndrome?

Bristol Palin has apologized for an inaccurate statement about the termination rate of babies with  Down syndrome.  She has brought to light a very important discussion, that we at the IDSC have discussed in great detail in the past.  While she is right to correct this statement, we would like to clarify where she may have gotten that information.

Dr. Brian Skotko has been working on this issue for a long time.  Here is information directly from him, concerning the rate of termination.

1) Approximately 2% of pregnant women pursue amniocentesis and CVS each year (Greely, 2011). 

2) Among these women who get a definitive diagnosis of Down syndrome, how many choose to terminate their pregnancies? (Natoli et al., 2012)

a)  Of the 7 population-based studies conducted in 3 states (CA, HI, ME) between 1995-2011, selective terminations for Down syndrome ranged between 61-93%, with the average at 74%.

b) Of the 9 hospital-based studies conducted in 6 states (CA, CT, MA, MI, NY, SC) and DC between 1995-2011, selective terminations for Down syndrome ranged between 60-90%, with the average at 85%.  

c) The decision to terminate a pregnancy because of a prenatal diagnosis of Down syndrome is dependent upon multiple factors, with this review demonstrating that rates vary by region.  Overall, however, very few studies have been done, as this comprehensive review demonstrates that only 8 states and D.C. have compiled such data.

d) Of the 10 studies conducted worldwide between 1980-1988, approximately 92% of pregnancies were subsequently terminated after a prenatal diagnosis of Down syndrome was made (Mansfield et al., 1999).

e) Studies have not comprehensively looked at the trends of selective termination among those women who receive a definitive diagnosis of Down syndrome.    

3)  What impact do these selective terminations have on the overall birth rate of babies with Down syndrome in the U.S.?  Between 1989 and 2006, there have been an 11% decrease during a time period when there would have been a 42% increase.  Put another way, as of 2006, approximately 50% of fetuses with Down syndrome are terminated/50% of fetuses with Down syndrome are born (Egan et al., 2011).

So you can see with all of these numbers and statistics how a  person could make a mistake when quoting this information.  The board of the IDSC has issued statements about this in the past, and will continue to do so in the future. Our stance is this; what ever the termination rate actually is, one baby's life taken, because a mother was given out of date information and was pressured to take the life of her unborn baby, due to a diagnosis of Down syndrome, is one baby too many.

Every day, we  are  contacted by families who were pressured to end their pregnancy. They want support and they would like to advocate about this issue. Unfortunately, many professionals, family members, and friends, have used this "90%" statistic to encourage them to end their pregnancy. It is being presented as a sort of "an everyone else is doing it" approach.

For a parent who is just receiving their child's diagnosis, hearing this inaccurate statistic can be heartbreaking. Many report feeling shock and discouragement. Also, as mentioned previously, it can be used to try to encourage a parent in the direction of termination. That is the danger of misusing this number.  However, it would be more accurate to share with parents that they are not alone. If only 2% of mothers are tested, that means 98% are not. Simply put, there are many of us who are raising our children, and are ready to support those who are new to the Ds diagnosis.

The mere fact that people are saying this to expectant parents at the moment they get their child's diagnosis lowers the dignity of all of our loved ones who have Down syndrome.

Instead, when a child is diagnosed with Down syndrome, standard protocol should be: directing the parents to support, directing the parents to accurate up to date information, and directing the parents to quality medical care. At no time should misinformation be given.

So we are glad that Bristol Palin has brought this to the attention of others on a larger scale.  Hopefully people will start to see how this affects a family, when they are pressured to end their pregnancy, when this statistic is used against the life of the child, who has Down syndrome.

As we always say, pressuring a woman to end her pregnancy because the baby has Down syndrome lowers the dignity of the child and the mother.  That is 100% true!  And that statistic cannot be debated.


Deb's mom said...

I have been trying to track down the truth of DS terminations for awhile myself.
This is the best explanation I've seen so far, but that last point makes no sense.
Why should there be an expected INCREASE of 42 percent between 1989 and 2006? The rate for DS
has been steady for decades (the stat has been 1 in 700 to 1000 live births). Just recently it
was changed to 1 in 691, which is still very close.

And how does an 11 percent decrease coupled with an "expected" 42 percent increase translate to
50 percent of babies with DS being aborted? That doesn't add up. (That's either a bad summation
of the study, or Egan, et al. are fudging things.)

Mike Sullivan @ SavingDowns said...

In New Zealand before the 2010 "quality improvements" around 55% of all babies with Down syndrome were not born due to antenatal screening and intervention. When Denmark introduced the same “quality improvements” the impact was a further halving in births of children with Down syndrome. A similar trend here in New Zealand would result in around 80% of all births of children with Down syndrome being prevented. That's all pregancies that would go to term wthout intervention, not just those with a diagnosis.

Here's the link to the Danish research

Amy Julia Becker said...

Deb's mom--the reason there should be an increase is because the rate of DS increases with maternal age, and more women who are older are getting pregnant.

Anonymous said...

Thank you for the proper information. Would you go a little further and tell us of those terminations, especially those diagnosed through the tri-screen or sonogram what is the rate and how does that increase the percentage and also of those diagnosis what is the percentage that were terminated and did not have Down syndrome? I have heard statistics like 92% terminate and of those terminations 70% did NOT have Down syndrome.

IDSC for Life said...

Anonymous, triple screen and sonograms screenings are not diagnostic tests, they simply establish the chances of a pre born baby having Down syndrome.
There is no way a definitive diagnosis can be made by a screening. As well, we don't know statistics for their termination based on a screening. We have not heard
the statistic you have sited. The only way to know if the baby has Down syndrome is through diagnostic tests, and as you see above, even those
statistics are hard to get solid information on. We would have to see the documentation of the rates you have above to respond to them, but we have
never ever heard that information before, and believe it is highly unlikely to be true.

Anonymous said...

I know women who have refused to be tested because they wouldn't consider terminating the pregnancy in any case. My daughter was pressured into taking the test, and cried the whole time. She tearfully asked her husband why they were doing this, and they decided at that point that they would accept and love their baby, no matter what the test showed. The test was negative, so no decision was necessary.

Anonymous said...

I think it is wicked of medical personnel to put pressure on anyone to end a life.
WhatEVER happened to medical ethics? Given a choice, I would always choose life over death.

Anonymous said...

My husband and I took the test, not because of coercion or because we would terminate the life of our baby girl, but because we felt that as her parents we would like to do some research if there was a likelihood. We realize that parents will never be fully prepared when it comes to raising children (especially your first), but we wanted to be informed on what some of her needs would be and what others have gone through. I was so discouraged when people borderline harassed us for taking the test without hearing our reasons (and some still condemned us even after hearing the reasons).

I'm not saying the test is infallible, but that it isn't always wrong to take the test if you want it. Though I must point out that sometimes the test can be wrong. My sister in law was a high probability from that test but when she was born, they found that the test was wrong.

IDSC for Life said...

Dear Anonymous July 30, 2012 1:15 pm,
Yes, that can happen. Please read our stance on testing. We are so sorry that people did this to you.

Christina said...

I refused the testing because there is no way I would consider a termination. Also it is only a statistical chance from the screening tests and not an actual diagnosis. As an SEN teacher in the UK I am fortunate to have experience of working with Down syndrome children. I feel many more people would choose not to take the test if they also had this chance and were not 'scared' into it by medical professionals who focus on the 'disability' a child may have.

Anonymous said...

Dear IDSC,
I had the triple screening when I was 25, because my results were so high, the Genetic Counsellor advised me to terminate immediately before the CVS results had come back.
I insisted that I wanted to keep my baby however this did not deter her from trying to thrust upon me her beliefs that I should terminate!! She told me a million horror stories and said all she could! Eventually she did win my husband over to the idea of termination and this later resulted in our marriage ending. After my CVS results had returned after weeks, I was then referred to specialist after specialist because the Genetic Counsellor believed that although DS was ruled out in the CVS that there must be another serious genetic problem with my unborn baby.
I agree that there would be statistics although I am not sure how you would capture them for people like myself who were advised to have a termination after the ultrasound. My risk factor was very high but I should have never have been advised to abort without definitive testing. My beautiful 7 year old woul not be here today if I had listened to my ex-husband and Genetic Counsellor.

Anonymous said...

Amazing and disturbing how genetic drs are advising patients these days, I would say file online complaints at so people can read these experiences

IDSC for Life said...

Dear Anonymous August 5, 2012 9:09 AM , We are so glad you had the wear with all to with stand the pressure from both the counselor and your ex husband. Yes, there is no way to know the number of terminations that happen to women who have not gotten definitive testing, but panic and terminate before they do. We will likely never know this statistic as well. Which is why we stand by our "One family pressured to terminate is one woman too many. One child's life lost by the pressure put on a family, is one child too many." statement.

We are so glad you and your 7 year old are doing well. Please, give her/him a hug for us.

Dana Seilhan said...

Not to mention, even if you are pro-choice, if you are *pressured into terminating*, by definition you have not made a free choice. More people need to understand this. A China-like scenario here is not something any pro-choice person should aspire to. I've met people with Downs. There are much worse ways to turn out--like being a sociopath, for example.

Unknown said...

In Norway we have a remarkable developement as to abortion-rate for children with Downs.
Before 2003 we had slowly raising numbers, up to 26,9%.
Between 2003 and 2005 there came an explosion: The numbers reached 85% due to the socalled
double test which is far more accurate as to finding such babies in early stages of their lives.
In 2010 the numbers reached over 90%, thus we follow close in the heels of Denmark where almost
no child with Downs is born.
Talk about endagered species?

Anonymous said...

my dr tried to deny my right to test. cvs showed my baby would have downs. i terminated and still think its the right decision. instead of supported my right to be an informed pt my dr tried to limit my options.

IDSC said...

To Anonymous December 7, 2012 11:54 PM: We are so sorry for your loss. As for your doctor trying to deny you your right to test, that is not something that should be happening. Parents have a right to test, and doctors should not be with holding that right from them.

HawksEye said...

Advice is like castor oil; easy enough to give, but terrible anxious to take.
tubal reversal

Tim Huinink said...

Why does it seem so important to the medical professionals to share the accuracy off the abortion rate of detected fetuses with Down Syndrome?
Beside the fact that the medical professionals seem to share this number only when they write about down syndrome, it shows little or no respect to all people who already are born and happen to have down syndrome , they seem to forget that these men, women and children with down syndrome were just born like they are.
And the most important point that I think needs to be that no doctor should be the one who influence a mother to make a certain choice based upon the abortion rates of fetuses with a disability that is old-fashioned insensitive and shameful behavior for a professional like them. I hope that someday soon that these practices will change for the better

Anonymous said...

I have two friends who were PRESSURED by their doctors to have an abortion because their children MIGHT have DS.
Praise be to God they both gave birth to beautiful perfect children. Beautiful and perfect by the way are two adjectives
I would use to describe to describe my grandson with DS. Mothers who have the love and courage to have and raise their
children in the face of adversity are the heroes of the world. No life should ever be allowed to be taken for the name of Quality.

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