Wednesday, November 19, 2008

Decisions, Decisions (warning: Pregnancy AND Kid stuff)

So I FINALLY talked with the nurse today and got the full results of the nuchal translucency scan and blood test.

In a nutshell everything looks good.

For those of you with inquiring minds...

Based on my age alone the risk of having a baby with Downs is 1 in 105.
After the scan and bloodwork results the risk is 1 in 2061 (same as a 21 year old)

Based on my age alone the risk of having a baby with other Trisomies is 1 in 189.
After the scan and bloodwork results the risk is 1 in 3761 (same as a 20 year old).

This is great news, but of course makes the decision about additional testing, well, agonizing.

The odds of a miscarriage with a CVS or Amnio are arguably higher than my new odds of having a baby with a trisomy. Makes this a much trickier calculation in reality than it was in theory. I've always said I'd have an amnio. I really want that 100% certainty, but I confess I'm on the fence now and my husband is definitely leaning to the no testing side.

So, we have some soul searching to do in the next couple of days, but we're certainly happy to have gotten such good news.


In other unrelated news, my daughter lost her first tooth last Friday. Oddly, she's so attached to it that she refuses to relinquish it to the tooth fairy. The night it feel out she was holding it and saying goodbye (I couldn't make this up if I tried!), so I offered to take a picture of it for her. After we got the photo and she tucked it under her pillow she burst into tears. We finally convinced her that she was not required to let the tooth fairy take it. I offered to place it safely in her jewelry box, but she was still concerned that the tooth fairy would find it. After about 10 more minutes we finally had her convinced that the tooth fairy only looks under pillows. The next morning she announced that she might be ready to let the tooth fairy take it that night. But that was the last she mentioned it, and the tooth remains safely hidden in her jewelry box.


Shelli said...

Wonderful news.

David is about to lose his first tooth as well (we check it every day, it wiggles, but not falling out yet!)

Waiting Amy said...

Hey Bean! I felt much as you did, that I would definitely be getting an amino. But them my results were like yours -- 1 in thousands risk. I did opt to pass on the tests, but admittedly a big part of that was that I was carrying twins, and decided I would not risk a healthy twin to terminate one that was not. It is so hard, but I know you will make a good decision for you and your family. Glad the results are so good, even if they make it hard.

Delenn said...

Coming from L&F---I am 38 years old and I had the pre-screen and it was very good. My OB was feeling like if the numbers were good on the pre-screen that there was no reason to go further. If all the other signs are good--I would say don't do it. The pre-screen is pretty reliable.

Alex said...

Here from LFCA.

I had the screening but not the testing (CVS/amnio) based on results similar to yours. I'd pretty much always intended to do that (not test if screening was OK), but in terms of your thinking, I'd add to the mix the following: you can rule out the problems they test for (typically Downs and several trisomies) if they test, but are not ruling out all problems -- just the most common/several serious ones. So it's still not a "guarantee," and of course there is a risk involved.

OTOH, if you do decide to pursue testing, I'd recommend asking specific questions about the m/c rate for the clinic/doctor doing your test; the 1/200 rate (or thereabouts) typically reported is, as I understand it, a national/general average and there is substantial variance. Basically, you want a place/person who does these ALL THE TIME with good results.

Hope you make a decision you feel good about, and of course, that it yields good results.

PaleMother said...


I popped in by way of LFCA. Congrats on your pg and your good early results. Best of wishes for an easy pg and as much peace of mind as possible, as soon as possible.

This is such a hard decision ... I find that I can 'conquer' most things with research, but the more I read about this, the more complex the issue became. I can only share my experience, in case it's of any use. If for nothing else, then at least for some company.

I also thought that I would have an amnio but found myself with very unexpected food for thought because of good preliminary, non-invasive results. I did get some thoughtful advice from the peri who did my anatomy ultrasound. I think many (not all) OB's are more reserved about influencing your choice about testing. The peri I spoke with seemed to have good perspective ... both as someone who performs amnio and as a parent himself who had kids when he and his wife were over 35. I recommend that if you are really having trouble thinking it through and you want more input, try talking with a genetic counselor and/or a peri ... perferably at a large city or university/teaching hospital with a lot of experience.

I started ttc at 38.5, started clomid at 39, graduated to an RE and injectables at 39.5 and started bracing for (the decision of to IVF or not to) IVF as I turned 40 ... when miraculously my last cycle of insured injectables gave me a Hail Mary BFP. I delivered my now 17 month old son just a month shy of 41.

I when I had my other son *earlier* at 35, I had an amnio. Back THEN, my OB's ... whom I love (then a practice of four very cool women within 5 years of my own age) ... were very non-committal, no-pressure, wouldn't-touch-your-decision-with-a-ten-foot-pole. But ... in a very off handed, not-telling-you-what-to-do way, it *was* communicated by both my ob's and the genetic counselor where the procedure was done ... that amnio was considered "routine and recommended after 35." And my desire to have the test seemed to meet with their (very low, low key) approval / validation. In spite of the fact that my triple screen (nowadays a quad screen) results before the amnio were very good and my maternal age was not all *that* advanced (I turned 35 on my due date). 35. Ding! Amnio.

In the end, the amnio results were good and that comforted me a great deal through the rest of the pg. I looked at it like this: when did I want to confront bad news? Mid-pg or in the delivery room after surgery, exhausted, with my hormones crashing down around me with the phone ringing and everyone demanding to know immediately how it went?

So in my last pregnancy, I went in assuming hands-down that I would have another amnio. I WANTED one. BTDT. Not going to have to sweat the choice this time. I am a need-to-know kind of person. Plus now, although I'd had the great luck to narrowly escaped secondary IF, I was still waiting for an anvil to fall on me. YKWIM.

In my last pg, even though I was the poster girl for why they developed an earlier screening (over 40), I didn't get to do the NT. (!) There was a snafu where my RE didn't transfer me until ... 10wks? ... and then I didn't see the OB until 12wks. And even though I'd done my homework and I'd called ahead for the NT contact info (this would have been my first experience with it) ... and even though I live in a major city ... I was unable to schedule this test timely. We went to an appointment only to find out the person who scheduled it made me miss the window for this very valuable screening by a hair. GAH.

A few weeks later, I took the quad screen blood test (at 16 weeks?). Lots of people have a (pardon my French) hard on about that test because of what they call "all the false positives." But I'd read about all of it until my eyes bled and I took the test with the understanding that at my age, the quad was like trying to make a basket from mid-court instead of from the free throw line. They deliberately make the target harder to hit because they want to cast a much wider net with older women for *possible* abnormalities so no one slips through the cracks ... but a 'positive' screen does not equal a defect. Lots of dophins get caught in that net with the tuna. "False positive" is a misnomer. A 'poor' screening result only means that one is *flagged* as being *justified* for the risk of more invasive testing. Testing that I was sure I wanted *anyway.* I also understood the quad test is more precise now with the addition of that fourth level check. And that the risk factor of amnio is much improved since the last time anyone studied it (20 years ago?).

The way I looked at it, if the quad gave me good news -- GREAT. If not, well, at 40 ... I practically EXPECTED to fail. Duh. Women with fresher eggs than mine failed every day and still had healthy babies. (I know, I would not have been so glib about it if my results had come back bad).

Before my amnio, someone called from my OB's office saying that my Dr. wanted to know where I was having my amnio because the Dr. wanted *really* wanted to be sure that they faxed my quad results to the genetic counselor ahead of time so they would have them for the pre-amnio counseling session. O. M. G. I assumed the very worst!

What I got instead was unbelievably good news. So good that I thought there must have been some kind of typo. All the women from my Over 35 ttc and pg message boards had shared their quad results and most of their odds had been in the four digit range. 1 in 1800 or 1 in 2200. Mine were in the *five* digit range. 1 in 23,000. 1 in 18,000. I asked them if there might be some mistake (I still wonder if there was). Later, one of my own OB's (who'd had her third at 42) glanced at the numbers and exclaimed "HOW did you do that?!" (Her numbers had been 1 in 150 or so).

So I hit the screening jackpot and much to my amazement ... even though I was five years older than when I was so routinely (yawn) slotted into amnio because of my age ... they were actually telling me NOT to do it. What? It was so confusing because the conventional wisdom had changed so much in just a few years -- totally away from automatically steering people into the invasive screens based on age alone. It seems the screening science has improved to the point where they are confident that the results of these tests genuinely adjust your odds and completely alter your equation. Of course, that's only a good thing if your numbers turn out well.

In my case, the odds of a problem were so incredibly much lower than the risk of the procedure itself (which I'd been thinking of as rather minimal) that it was no longer *medically justifiable* to do the test. My head spun around; this scenario had never occurred to me. They were talking me OUT of the amnio? At 40?

After the counseling, they did the anatomy US and once again, all was reassuring. Then I quizzed Dr. Perinatologist about the medical opinion of what we should do about the amnio. Because at the end of the day, I thought that was the barometer that worked best for me.

The medical opinion was clear, but the Dr. beat around the bush about the fact that the amnio decision was not strictly about the odds and logic. It was also about what the couple needs most. It was about peace of mind. He explained that for some, the absolute certainty of amnio is better than worry. Without it, it anxiety might consume the pregnancy. For others, any risk to the baby is unacceptable and they could never live with themselves if the amnio harmed the pregnancy. Then he shared his experience with his own two children, where they made one choice about amnio in the first pregnancy and a different one in the second pregnancy. And their screening results were far more ambiguous than my own.

He made a great point about what you need. What I personally needed was ... to base the decision on what was informed and rational. Because then if something went wrong, I could at least console myself that I'd made the best decision I could based on what I knew and what was reasonable. What I knew after my great quad results was ... it would be crazy to risk this baby I'd fought so hard for and beat the odds for in the name of 'absolute certainty' when the screening I had in hand, without any risk at all, was already so emphatically reassuring. I mean, if 1 in 23,000 didn't console me ... what kind of control freak was I? One crazy enough to risk my baby because 1 in 23,000 wasn't *good* enough? That just didn't make any sense.

It's silly, but I think it was actually more stressful for me to choose *not* to have an amnio than to have one. But that's just me.

So that is how I was talked out of an amnio at 40. My point is not that you should do or think as I did. My assvice is ... understand as much of the science as you can digest. And then balance the risk and the possible consequences against what will give you the most peace of mind in the end. I should also note that I understand full well that it is so easy for me to go the medical, Take-Every-Test-They've-Got route *only* because I've never been burned. People who have experienced loss(es) bring a whole different perspective to this dilemma with good reason and I understand why.

If you take the quad, the results will be combined with your already good NT results and it's possible your numbers will improve even more.

Good luck! Sorry this was so long. I would have emailed it to you, but I didn't see a link for that.