Friday, June 26, 2009

I Am the One ( In 1 out of 5 ...)

The other day I had a project transition meeting with an editor whom I'd filled in for while she was on maternity leave. At the very end of our meeting I said, "Congratulations on your new little one. I hope everyone is well."

To which the woman happily chirped, "Oh thanks! I had some health problems but I'm better now. And we were also worried throughout the pregnancy because my daughter had a 1 in 5 chance of d0w.n syndr0me, and scans kept showing fluid around her heart. But she turned out just fine too!"

Clutching my lukewarm cup of tea, I fought the urge to blurt "What a coincidence! One of my babies also had 1 in 5 odds for a trisomy, plus anomalies on scans. Except my daughter was NOT fine!"

I realize this woman didn't do anything wrong. Yet the exchange unexpectedly rubbed me entirely wrong.

Part of my bitterness owes to the keen loneliness on being the isolated "one" in the 1-in-five risk stats we both received. Her kid ended up in the 4 out of 5 who are OK, while mine did not. And therefore her pregnancy experience is now fit for corporate meeting banter, while mine will never be. It's one of the smaller injustices that comes with this sort of loss, but nonetheless it still hurts to not be able to discuss what happened openly, in almost any normal circumstance.

But it's more than that. Ever since the Tiller murder I am extra sensitive to the formulaic story that showcases a pregnant woman who is scared to death by possible problems brought up by a screening test, only to go on to have a perfect baby in the end. This story raises my hackles for several reasons.

First, the story always leaves out that it was a screening test, rather than a diagnostic test such as amnio or CVS, that caused the scare. The general public has the impression that all pregnancy testing is very inaccurate precisely because nobody clarifies what test they are talking about.

Though I hasten to add that "inaccurate" is also misunderstood when it comes to the tests. Most people don't understand how pregnancy screenings work. A screen won't diagnose a specific baby's problems. It only states the risk of a baby having a problem based on the outcome of other babies who had similar fetal measurements, maternal serum levels, etc. By design, a screening test casts a wide net for potential problems. You actually want to have some women in there who end up with healthy babies when you design the parameters. Why? Because a terrible screening test is NOT one that warns women carrying healthy babies that there might be a problem. No, a crappy screen is one that miscasts unhealthy pregnancies as fine. Our current screens have an extremely low rate of missing sick babies. So for what info they are designed to give, screens function very well. Yet all we ever hear from people is how inaccurate they are!

Another beef I have with stories of pregnancy testing scares is the tone in which they are relayed. There is usually a lot of resentment and hostility for being made to worry when all was actually fine.

My issue with the hostility is that these women actually chose to take the path of long-term worry, if they didn't bother to get a CVS or amnio to further clarify their screening test results. CVS and amnio, unlike screening tests, diagnose problems. And they have a 99.4-100 percent accuracy rate. So when it comes to a trisomy, there won't be any wondering either way once you get those results.

Yes, amnios and CVS are invasive and carry risks of their own. The average loss rate for amnio in the U.S. was recalculated by a recent UCSF study to be something like 1 in 1200. But if you have a 1 in 5 shot at a baby with a trisomy, the chance of a real problem is vastly greater than your chance of hurting the baby -- healthy or otherwise-- with the invasive test.

Bottom line: If you are going to wait and wonder after receiving poor screening results, don't hold a grudge against the screening test for this predicament. Your "needless worry" is the direct result of your choice to get a screen but not follow up with a diagnostic.

Thankfully most people are not the "one" in the 1-out-of-whatever risk assessment they receive, so even if they don't fathom what their particular stats mean, it still works out OK for them in the end. But misunderstandings about screening tests are so pervasive that I think they do a great disservice to people like me, who researched and soul-searched and ultimately ended up on the lonely side of the 1 in 5 statistic despite everything I did.

When most folks think that all pregnancy tests are equal and equally faulty, it is only a short leap to treat women who go through medical termination with disdain. Because if you believe the tests are wrong, it is easy to decide women who end pregnancies for medical reasons must be lazy, selfish, or just unwilling to take a leap of faith that would probably be rewarded with a healthy baby in the end. It is easy to scorn, and scorn at its root is just a few steps away from hate.

A long ways down that hateful, ignorant road, are the bloody steps of Dr. Tiller's church -- a long ways down, but still, the very same road.


Sara said...

Wow, great post. Excellent explanation!

Beruriah said...

Excellent Wabi. Thank you.

Mama to Monkeys said...

You always give me such amazing perspective. Thank you for that.

Anna said...

Wow. Absolutely. Well done and said, from another mama who made the decision she never thought she'd have to make.