Everything is okay, but...

[anna7602]

I am a little ragey about modern science right now. I am, of course, grateful for all the advances medicine has achieved and won't enumerate all the wonderful things that wouldn't be possible without that. However, right now, I want to yell "eff this advanced-maternal-age stuff!"

DH and I spent an hour in consultation with a genetic counselor yesterday and an anguished 4 or 5 days leading up to the meeting between finding out that one of our pre-screen tests came back with worrying results and being able to actually schedule an appointment. There was a lot of stress and a lot of crying when I had no idea what could be wrong and whether I would be able to continue with a healthy pregnancy. And for what? To find out that the first test I did 6 weeks ago was MORE accurate than the most recent test with the questionable results and that everything is fine.

However, I had to take the second test (actually, more like the 900th test overall, but the second that tests for the specific abnormalities that this one does) because "it's highly recommended for AMA." And because the results indicated there was a chance I might have an issue, I had to schedule a one-hour consult with a genetic counselor to determine whether I should have an amnio. And I would have to have said amnio by the end of this week if I did decide to have one. Pressure, pressure, stress, stress.

So we walk into the GC's office yesterday and she tells us right off the bat that we don't need to worry. Viewed in combination with my previous test results and looking more specifically at the indicators evaluated on this test, she had no reason to suspect anything was off and wouldn't recommend an amnio. We were very relieved, of course, but she still had to go over all of the information, including diagramming a family tree with every existing malady on both sides.

It's sobering to sit down and count the instances of cancer, diabetes, and the like that have occurred in our families and hear about the likelihood that our child may develop one of these illnesses down the road. But you know what? This has nothing to do with my age! It's just crappy genetic luck. The fact that I am also at risk for these things makes hyper aware of the kind of diet and lifestyle behaviors that I need to follow to minimize my risk. I would pass these lessons along to my children regardless of how high or low I think their personal risks are.

Also, the chance of abnormalities that they calculated with the less accurate test was not based purely on a scientific reading of my hormone levels, etc. It was cross-calculated with my risk level by age. So if I was 5 years younger, the risk levels based on hormones would have been multiplied/divided/whatever by a different number and I probably wouldn't have even been told I should think about having an amnio or further tests.

Grrrrr!

[starlily]

I'm sorry you had such a rough week.

I'm also AMA, and my HMO requires a visit with a genetic counselor, but it occurs at 7-8 weeks along so they can explain all the testing options, the odds of each, & do the genetic diagram. I found it useful to have that information before anything was done rather than after. It was a lot to process, and I can't imagine how much.more difficult it would be under the stress of thinking that something was possibly wrong. Maybe it's a suggestion to raise with your practice?

[anna7602]

Good idea, starlily. The fact that we were having this talk at 18 weeks was especially maddening. That is pretty far along to be faced with the possibility that you might have to terminate a pregnancy or carry a not-healthy baby to term.

I will talk to my doctor at next week's appointment.

[melsamoony]

((hugs)) that is very frustrating and I am sorry you have to go through that.

[ringstrue]

UGh that's a lot!

I wonder if you are also in a demographic or ethnicity where certain issues are higher and so that's also why they gave you a talking to? There is a big "war" on obesity and diabetes and they seem to use all those appointments pg women and parents of young kids go to as opportunity to drill those warnings into us .

[starlily]

Feb 27, 2014 12:51:09 GMT -5 ringstrue said:

UGh that's a lot!

I wonder if you are also in a demographic or ethnicity where certain issues are higher and so that's also why they gave you a talking to? There is a big "war" on obesity and diabetes and they seem to use all those appointments pg women and parents of young kids go to as opportunity to drill those warnings into us .

My meeting didn't cover obesity or diabetes at all, even though there is a strong history of diabetes on both sides of my family. The genetic counselor was just interested in any developmental issues or history of trisomies anywhere along the family lines, as well as our ages & ethnicities. She also asked if I had any concerns about exposure to environmental factors like fumes or chemicals. Then she calculated the risk, presented all the testing/screening options, and made a recommendation based on our risk level.

The quality of the counselor can vary though. My first pregnancy I had one that pushed for an amnio right off the bat, even though my OB didn't think it'd be necessary without anything of concern on the NT/quad screen bloodwork. The counselor I had this time suggested starting with Verifi, and then a CVS or amnio if there was a concern raised. My initial risk level based on the diagram was the same both times.

[Deleted]

I've seen Anna and I know that the doctor would not be drilling it in about obesity because she is way far away from needing to worry about that!


OP, that is really stressful Honestly, I cannot believe they would wait that long to bring you in about this or that they do the extra tests when your preliminary tests turned out just fine. Hopefully you are all in the clear now and they will back off about your age!

[Myrrhine]

That is terrible! I am sorry they put you through so much stress and worry.

[D2M]

I'm really glad everything is OK but I'm sorry you went through so much stress. What test did they have you do at 18 weeks, if you don't mind me asking?

[anna7602]

Feb 27, 2014 14:32:32 GMT -5 D2M said:

I'm really glad everything is OK but I'm sorry you went through so much stress. What test did they have you do at 18 weeks, if you don't mind me asking?

It was the 2nd part of the blood test that goes with the NT scan. I don't know if it has its own name, but it looks at spinabifida and neural tube defects and again looks at chromosomal abnormalities.

I actually had the test at 16 weeks, but then it takes about a week to come back. So I got the call from my OB at 17 weeks and couldn't get in an appointment with the GC until 18 weeks.

[earlgreyhot]

I met with the GC at 9 weeks, which was somewhat helpful but not really since is done my research and knew what the difference between screening and diagnostic test and how to access the risk.

I'm 18w now and, yeah, feels crazy late to be going over all that now of you've already had the screenings and are comfortable with the odds.

I think in some ways they have to be clear that the only way to know if your baby is 100% clear is the Amnio and this point. But again, 18w is really late to have the conversion.

[anna7602]

Feb 27, 2014 15:29:52 GMT -5 swank said:

Feb 27, 2014 14:59:48 GMT -5 anna7602 said:

It was the 2nd part of the blood test that goes with the NT scan. I don't know if it has its own name, but it looks at spinabifida and neural tube defects and again looks at chromosomal abnormalities.

I actually had the test at 16 weeks, but then it takes about a week to come back. So I got the call from my OB at 17 weeks and couldn't get in an appointment with the GC until 18 weeks.

It's referred to as the AFP test or Quad Screen, I believe. 

Thanks. I swear I am not uninformed about my pregnancy, it's just that I've had so many different tests that I can't keep all the names straight and only remember what each test looks for.

[chickadee77]

I understand your frustration. However, after going through what we did, don't completely discount the information you have gotten, and remember that while yes, there are a slew of AMA tests, if, God forbid, there is something wrong, you will be aware of it, whereas if you were in your twenties, they may not have even run the tests and you could potentially be blindsided by something at, or close to, birth.

When we got definitive bad results in our second pregnancy, I was so thankful that we had already reviewed our options and discussed possible outcomes the first time around - even though it sucked to think about (even though the first also ended up as a missed m/c anyhow).

I'm probably not expressing myself well - I'm exhausted today, lol. But I'm trying to help you glean the good from the experience, even though it was stressful and not ideal. (((hugs))) and I'm glad all is well.

[curbsideprophet]

Sorry it has been so stressful.