Although you may have thought I'd closed the chapter on the whole nuchal scan issue and have been kicking around the city gleefully purchasing new maternity clothes because I have accepted my potential fate, whatever that may be, that's not exactly true. The more I thought about the results of the nuchal scan/blood test (high hCG) the more I thought I should talk to a genetics counselor. Conversations with my sister (long time RN and currently studying to be an NP, but no background in obstetrics - besides having four kids) and searching on-line is probably not the best way to handle potentially devastating news. So, we met with one yesterday. For some reason, I thought that it might alleviate some of my concerns. It did not. I wanted to get as many facts as I could about the risk of amnio, so that I would feel like I made an informed decision not to have one. Also, I wanted to get a better analysis of my results. This is what I learned (according to the counselor):
1) There is no known genetic link to Downs - in other words, just because no one in my family has Downs and no one in the husband's family has Downs, does not mean we have a lower risk of having Downs. The risk is completely about the age of the mother. This surprised me. I have read some studies, briefly, about a potential risk between the MTHFR gene and Downs, but let's ignore that, thank you very much.
2) I will be 36 at the due date - the analysis increased my risk to that of a 37 year old. However, from what I've read, it's more like 38.
3) Although the PAPP-A and the nuchal were considered normal, the hCG was decidedly not. They want the numbers to be around 1. A number above 1 for the hCG and below 1 for PAPP-A gives a higher risk for Downs. My hCG was quite a bit above 1, but again, the PAPP-A was normal. The counselor did say that it was the hCG that placed me into that risk category.
4) When I asked what the analysis would be if you changed my age to 25 or 30 she basically said that wouldn't make any sense because the risk at 25 or 30 is so much lower, therefore, the results would be meaningless - because it's all about the age of the mother.
5) The blood tests in the first trimester are actually more accurate than those given in the second.
6) I still have less than 1% chance of carrying a baby with Downs. However, I could be that one person . . .
7) The national average for "complications" from amnio is 1/400. Complications include, but are not limited to, severe cramping, bleeding, leaking amniotic fluid and miscarriage. I've read that the risk of miscarriage from amnio is 1% - but it's hard to quantify. The hospital does not have their own averages for complications from amnio. I found this highly irritating.
8) Upon learning that the husband is a teacher, she basically went on to say what a cake job teaching is, you know, summers off, etc. This did not sit well with the husband.
9) She seemed to be pushing for the amnio because "the birth is supposed to be happy, and what if they take the baby away suddenly and all the doctors are trying to figure out what's wrong, wouldn't that be horrible?" I found this completely bizarre. Right, because even if I had the amnio and the baby was normal, that means that there is absolutely no possibility that there could be complications. Is it possible that she receives kick backs from each amnio performed? One wonders.
10) She doesn't necessarily think blood tests are great tools because you could just have a concentration of one thing in that particular blood draw. In other words, we could have had the test done fifty more times and my hCG would be normal. On the other hand, they could take the blood 100 times and one time it shows a problem, and there really is a problem.
11) I hate genetics counselors and I'm still not having the amnio.
The End.
********
I should have mentioned that we will be having the 20 week scan and we'll know more then, potentially, and the amnio is still available at that time. Again, though, the risk of a miscarriage from the amnio is still higher than my statistical risk for carrying a child with Downs.
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8 comments:
If it were me, I woulnd't do the amnio either. If you're not going to terminate, then there's not a very good reason if the risk is for Downs and you won't terminate for Downs.
Bravo for sticking to your guns but being as informed as possible at the same time. :)
I'm not sure what #7 has to do with anything, but I think you're doing the right thing for you.
I don't blame you one bit. Yes, complications are 1/400, but that is a risk that you can control, by doing or not doing the amnio.
Miscarriage changes your perspective on everything, doesn't it? I now always feel like I will be that one person in 100 with the complication, when before I would think "hey, what great odds!."
Good on you for making a fully informed decision, hope the to-amnio-or-not is the last of the drama in your pregnancy
J
i would have the amino, but i know that it is a tough decision. and i always agree with going with your gut.
*i* would have the amino because god forbid there was something wrong, i would wnat to be prepared. i would have to quit work, which would mean shutting down my firm, laying off people, etc. and i would want every resource availible at delivery ---specialists etc. i don't think i would terminate-the only reason i do not say 'no' is because i am not comfortable making a decision like that before i know what that would really feel like.
i had a hard time deciding whetehr or not to post this-i really hope i have not offended. \
for the record, it is such a personal decision and there is a fantastic argument on both sides. so, so hard.
and i always want to know the worst case scenario so that i can find peace with it.
thinking of you.
xoxo
Good gracious, that genetics counselor sounds like no help at all. Uck.
Hope having a firm decision brings you some peace.
It sounds like you've done all your homework and combined your knowledge with your instinct and made the right decision for you and your slacker-teacher husband (I'm married to one, too, and know that job is SO not a cakewalk).
I found the risk of miscarriage from amnio a little too high for my comfort level. My doctor put it to me like this: "I know lots of people who've had amnios with no trouble, but I've also had quite a few patients who have miscarried as a result." That freaked me out.
It's funny how subjective the interpretation of this science is. Just hilarious.
I have been reading your website and I have just currently gone thru the same questions and past complications as yourself.
I'm 22wks and we decided not to do the amnio. As we were processing whether to do the amnio or not, our decision was that regardless of the outcome we would have kept the baby (out of everything we have gone thru) and if something would have happened during or after the procedure, I couldn’t forgive myself and that was the breaking point.
Update: We just did our 20wk high definition ultrasound and everything was ok.
Nathalie
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