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Monday, October 14, 2013

Down Syndrome Termination Rates

Ever since Kayla was born I've seen/read an often quoted stat that about 90% of babies with Down syndrome are aborted. That statement is very misleading though; sometimes I would see it more accurately portrayed with the words *prenatally diagnosed.*

Simply saying 90% of ALL unborn babies with Down syndrome is misleading because it doesn't take in to account the percentage of diagnoses that were made at birth or the percentage of cases that were suspected (such as my own) by a screening test but not confirmed by an amnio or CVS.

I have been guilty of using the "90%" figure in the past, but I at least would make sure to say that was of prenatally diagnosed pregnancies.

However, even repeating that statistic was harmful because it leads women who do get a prenatal diagnosis via amnio or CVS to believe that virtually all women in that situation do abort; and that it is probably the most acceptable decision to make.

In reality the 90% statistic is not accurate. Not even 90% of pregnancies that were prenatally diagnosed with Down syndrome is accurate. Recent research has shown the percentage to be much lower.

24 studies done across the US between 1995-2011 show the weighted average is about 75% of those who get a prenatally confirmed diagnosis via amnio or CVS. And only about 2% of women in the US get an amnio or CVS, so that 75% only applies to that small group of women ... and only those women who get a positive diagnosis. (**Natoli et al. 2012. Prenatal diagnosis of down syndrome: systematic review. Prenatal Diagnosis. 32, 142-153.) (Termination rates for other countries are higher though).

The Down Syndrome Guild of Greater Kansas City has put out a great file on dispelling the 90% myth and why it's important to stop using the 90% statistic. But I can't figure out how to attach the PDF so I'll cut and paste this part of the file giving credit to the DSG of Greater KC.

This myth also infects our culture leaving many people saying in public forums, "If the vast majority of people terminate a pregnancy when they find out the baby has Down syndrome, then Down syndrome must be really, really bad." This leaves parents of children with Down syndrome feeling like they have to justify their decision to continue a pregnancy when questioned by those around them. Fundamentally, this myth risks creating a culture that is less likely to accept and value children with Down syndrome, and it's based on false information.

So if, like me, you've also quoted the 90% rate, please know that recent research shows 75% of prenatally diagnosed pregnancies is more accurate.

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Becca said...

I'm glad to know that that number is actually lower. Thanks for this info! :-)

Saving Downs said...

Unfortunately in most countries the 90% + abortion rate after diagnosis is correct, but the overall abortion rate is more like 55 - 60% of all pregnancies, as not all are screened. See http://www.savingdowns.com/birth-numbers-for-down-syndrome-point-to-widespread-discrimination-and-eugenics/

Noah's Dad said...

I agree with Mike, sadly that stat is correct. (Although I wish it wasn't.)

Also when people say over 90% of children with Down syndrome are aborted (the stats is about 92%) I don't think anyone thinks that a child diagnosed after birth (like our son, Noah) is aborted.

Common sense would mean that 92% diagnosed prenatally are aborted.

My hope is more Doctors would learn how to deliver a down syndrome diagnosis the right way.