I woke up early in a fit, caught in a dream that I was arguing with my in-laws about my decision NOT to do amniocentesis. I had been in a state about it last night when Adi told me that they'd asked us to talk to another OBGYN friend of theirs. I am determined. And luckily, Adi respects my determination.
Later, here's the email I sent them:
I understand from Adi that you are concerned about our decision not to perform amniocentesis. I hope that knowing the facts behind our decision will help you feel comfortable with our choice.
The key facts are as follows:
The Integrated Test התבחין המשולש
-The results from the Integrated Test, "התבחין המשולשfor us personally,
for this pregnancy are 1: 8,100. That number is considerably better than the
statistical risk based on my age alone, 1:290.
-The accuracy of the
Integrated Test varies between 94-97%, depending on who you ask and on who
performs the test. Dr. Shapria of Elisha hospital who performed the test for me
places accuracy at 96%. He is considered the best at what he does, his equipment
is the finest, and his testing includes measure of the nasal bone, a factor
known to increase accuracy of the test.
-The risk of losing a baby due to
performing the Integrated Test is zero. It is a totally safe, non-invasive
procedure. It simply cost money and time. And it's done already!
-The main reason for doing amnio is to achieve closer to complete accuracy on
the question of Down's Syndrome. The accuracy of amniocentesis is 99%, and “An
amniocentesis can accurately detect many birth defects including Down's
Syndrome, but it cannot rule out all problems or guarantee your baby will be
free of all birth defects." (WebMd.com)
-The risk of losing a baby due to
performing amniocentesis is somewhere between 1:100, 1:360, to
1:1000, depending on who you ask. My doctor, Professor Ron Gonen (head of his
deparement at Rotchild), considered by many to be the best doctor for amnio in
Haifa claims his personal risk level is better, I think around 1:1000.
-According to Dr. Moshiach who admitted me at Ram Bam hospital and who is
also highly-regarded in Haifa, my personal risk for miscarriage due to
amniocentesis is higher due to the fact that I have two myomas, each ~8 cm in
diameter, sitting directly below the cervix ("tzavar harechem") and am faced
with a high-risk pregnancy.
-The reason that misrad habriut recommends amnio
for women over 35 is simply because that is the point at which they estimate the
risk of the test itself matches the risk of Downs Syndrome. Their statistics do
not take into account the personal risk circumstances of the particular mother
or fetus. They are merely guidelines.
I summarized these details in a table and sent them, along with an article from the NY Times describing the Integrated Test. The Integrated Test is relatively new in the United States, but even without it, few American women perform amniocentisis unless they have strong personal reasons for doing so. See http://www.nytimes.com/2005/12/27/health/27brod.html?ei=5070&en=e0a12f5ed0f06baa&ex=1154145600&pagewanted=print
I try to approach statistics as rationally as possible and have made every effort to arm myself with as much information as is available. Rationally, I do not see how to justify an amnio in my case. Even if we were to assign to Professor Gonen (or any other doctor who performs amnio) superpowers which he himself does not claim to have, and were to quadruple his skill so that his risk of miscarriage due to amnio were only 1: 4000, that does not approach our personally estimated risk of Downs Syndrome at 1:8100.
I have sought out the best doctors and their opinions. We are now waiting for a call back from Dr. Gonen, but our several earlier discussions with him and with Dr. Shapria on the subject suggest that performing amnio when the Integrated test results are anything better than 1:600 or so would be unnecessary, especailly in my case.
However, in the end as I'm sure you know, our approach to statistics is a personal, emotional decision. Emotionally, I could not bear to lose a healthy baby for sake of a test that buys only the slightest additional margin of certainty. It would be wonderful if we could know with 100% accuracy that our baby will be absolutly perfect. However, no test can provide such a guarantee, not even amniocentisis.
I'm sure that you share our desire for a healthy baby and I hope you will respect our decision not to put our baby at unnecessary risk.
Just after I clicked "send", Dr. Gonen returned my call. When I told him the results, 1:8100, he said "Great, that reduces your risk substantially." I told him our decision not to do amnio and he said "Yoffi!", terrific! emphatically. He's not a very emotive guy so that was a virtual outpouring of support from him and very reassuring.