Friday, April 13, 2007

Can't I just take the SAT again?

Recently, the always-thoughtful M-B asked me if I planned to have CVS. It seems like a simple question, but somehow the question has unleashed a torrent of conflicting thoughts and emotions.

The short (and easy) answer to the question of whether I'll have CVS is that I don't know yet if it's even an option. Being in a new country means that I am not certain of the standard offerings available for a woman of "advanced maternal age" (oh how that phrase makes me long for the days when being "advanced" was a good thing!) If CVS is rarely offered here, then I don't think I'll sign up to be one of the rare training cases offered at the local medical school. However, if it's standard operating procedure, and the doctors doing the procedure have a lot or experience and low rates of complication, then I'll seriously consider it.

Practical issues aside, however, I am really struggling with the deeper dilemmas involved in the decision to proceed with a "needle test". This comes as an enormous surprise to me. I had always thought that of course I'd sign up for any available test. I'm addicted to knowledge. I love to know what's going on. I remember being 30 and being annoyed at the thought that amnio was only standard for women over 35. I thought it was unfair that if I got pregnant I wouldn't be offered the level of knowledge and control that technology made available for older women. However, that was before I realized how little control I would have over every aspect of my reproductive journey.

Here's the essential dilemma for me: is it worth accepting the (relatively low) risk of actually causing a pregnancy loss to find out if the growing, apparently healthy fetus has detectable medical problems? The correct decision for any couple will depend on a number of things, including: whether knowing that there is a problem will cause them to take any actions that they wouldn't otherwise take, whether they fear loss or a sick child more, and their ability to handle uncertainty.

I have had several friends who refused all testing because they said that they'd carry the pregnancy to term regardless of what the testing revealed. I don't feel that way at all. While I respect the fact that some people's personal/religious beliefs are such that they could not deliberately terminate a pregnancy, I think that I would decide to terminate under certain conditions, especially if the child was diagnosed with a condition that would cause it chronic pain and certain early death with no hope of treatment. For me, being a parent means being able to put the child's interests ahead of my own, and I think that bringing a child into this world knowing that it would find nothing but suffering here is not a decision that I could make in good conscience. However, I also realize that if I were actually in the situation, my thoughts might be different. If there's one thing that infertility has taught me, it's that you never really know how you would feel about something, or what you would do in a situation, until you actually are IN that situation.

Personally, I believe that knowledge=power, so I very much WOULD like to know if there was something wrong with this pregnancy as quickly as possible. What I would do with this knowledge would depend on the actual diagnosis. However, after working so hard to become pregnant, and knowing that at 38, I will probably have limited opportunity for additional pregnancies, the thought of doing anything that would increase my risk of loss, even slightly, fills me with abject terror. As awful as it would be to be blindsided with a seriously ill child on what I hope will be the happiest day of my life, I think that it might be even worse to have to live with losing a child as a result of my own decision to proceed with CVS or amnio. A friend's sister had an amnio-induced miscarriage (of a fetus that the amnio found to be healthy) a few years ago, and this undoubtedly has affected my feelings about these tests. I know that they're usually safe, but I keep thinking "what if I do the test, have a miscarriage, and then never get pregnant again?"

Then there's the issue of uncertainty. Can I really go through the next seven months not knowing for sure? Won't I be a nervous wreck? I don't know. I am spectacularly impatient, but infertility has been good training for living with uncertainty, and I'm certainly better at it now than I was a few years ago. While uncertainty used to feel like a crisis, now it's more of an annoyance.

So, my plan at the moment is to talk to my doctor (I won't be released to an OB/GYN until 11 weeks), have nuchal fold translucency screening, and then make a decision armed with a bit more information.


Sarah said...

that sounds like a good plan. i think about this a lot. i'm concerned that because our fertilization failure might have been due to chromosomal abnormalities, we could be at higher risk for abnormalities in the fetus. i don't even know if this is still true at this point. but in your case, you don't have any specific reason for concern (other than your age and that we're all concerned), right? so it seems like a more cautious approach makes sense.

i'm very interested to hear where this goes. keep us posted!

Samantha said...

It's a tough choice to decide how to handle the testing, and you have a different country to boot! It sounds like you are making a very informed decision about how to handle it.

Good luck and I hope the nuchal fold translucency screening shows everything to be okay!

cheryl said...

I had basically the save feelings you did. So I just opted for the level 2 u/s and the dr had a 100% rate of review. So if dr felt it was fine then I opted for fine also and would not take the Amnio. I was afraid of the loss risk also. Also I must note that none of those abnormalities ran in our families. And yes everything was and is fine even w/o the amnio! oh just so you know some of those tests have false positive problems. I think the one they drawl blood for, so of the seven people I knew who had it done came back with false pos's, and panicked and had more evasive testing done and were on edge for 2wks. I hope you are enjoying your experience and are keeping a private journal for you child to enjoy later.

Lut C. said...

I'm thinking exactly along those lines. I'm leaning against invasive testing, but will decide after the nuchal fold measurement and triple test.

There are no guarantees. A cousin of mine got fine results on all the tests, yet she had a severely disabled child.

Marie-Baguette said...

I am going to do a post about this subject -- it is so difficult to make a decision. Nuchal testing apparently is a good indicator of trisomy but only in 80% of cases. Some women like my friend J have a perfectly good nuchal but the amnio showed that her baby had Trisomy 18. My nuchal was abnormal, but the CVS showed my baby was fine. And I will do some research as to CVS risks. I guess I was not worried about the risks because I was very fortunate to be seen by world leading specialists in NYC but not everyone has this luxury.
Thanks a lot for your comments on my blog. I am good, I am just very tired because of all the stretching going on. I have heard that some women don't feel anything, and some have to spend their days in bed, so I guess I am between those 2 extremes. Hubby used to worry a lot, but the doctors told us is was normal.

Thalia said...

The nuchal fold is pretty useless alone, you need the blood tests that go along with it to do the triple screen (results ready the same day) or quad screen (results not ready til 15-16 weeks when you have the second blood test). If you go to the fetal medicine centre website it explains the test they do, which is pretty accurate. You could see if someone in seoul offers that.

I felt completely the same about taking any risks at all re amnio etc. Just don't want to unless something came back dodgy, in which case I'd want to know what the story was. Luckily for us so far the indications are good (although not conclusive).

Glad everything is going ok!

Baby Blues said...

That's quite a predicament. Your plan of the moment sounds good to me. Just gather as much information. Knowledge does equate to power when it comes to decision making.