need to 'talk through' my nuchal results and f/u bloodwork

JAM2000 · May 2011

hi everyone,

I'm posting about my nuchal results again. I'm sorry if I've exhausted all of you with a million questions, etc. Its just one of those things that I really can't talk to anyone but DH about.

Anyway, I posted on Thursday about my results. While "within range" by 2011 standards it is now considered "intermediate risk."

well, nothing has changed since Thurs. I just saw my OB for my monthly visit yesterday. My results from last week were considered "intermediate risk" I have a 1 in 532 risk- levels of a 32 yr old- which is what I am.

The Maternal-Fetal Dr recommended the sequential blood test- which I planned on doing. Then when I saw the OB she just blurted out and said 'well would you get an amnio?' I was kind of caught off guard- I didn't know what to say. I just said that I'd like to see what comes back from this blood test.

Here I am second guessing myself about going for the next step blood test and not doing the amnio right away. The OB even said to me "I don't know what I would do if I were in your shoes. Statistically, and amnio carries a 1:500 chance of miscarriage but your nuchal results are 1:532"

I had put this whole 'what if' thing out of my head but talking to the dr and hearing all these statistics, etc. my mind is racing with a million 'what ifs'.

The dr did say that had I gotten these results a year and half ago they would have said, fine you are within range no problem. But now they have this 'intermediate range' and I fall right in the middle of it.

Anyway, guess I just needed to talk this out. thanks for listening.

susanmosley · May 2011

Hey JAM, if I had anything worthwhile to say here, I would. I just don't know - it is such a personal decision. Pregnancy is stressful! Feel free to post here all you want about this, and GL figuring out what is going to be the best for you and your family.

JAM2000 · May 2011

thanks susan. I don't know what to do. But I know this sounds so strange but I have this overwhelming sense that everything is OK- like a gut instinct. But it's these medical choices of 'what should I do now' that is actually the most stressful.

thanks for listening!

Mc_Newlywed · May 2011

For me, I think the decision is made easier by thinking of it this way -

What would you do with the results from the amnio?

If you think you would consider terminating the pregnancy (and you certainly don't have to answer that question to me or anyone else) then yes, I'd get the amnio.

If you know for certain you wouldn't terminate, then having the results from the amnio would only serve to inform you about the baby's future and give you time to read up on the possible scenarios. In that case, I personally don't think the risks of the amnio are worth it. You can always read up once the baby is here.

But that is just my opinion and perspective so take it with a grain of salt

susanmosley · May 2011

I had an overwhelming feeling about something when I was pregnant. I'll spare the details here. It was accurate and real. Anyway, I really think there is something to listening to yourself. So, I wouldn't push aside that overwhelming feeling...it is there for a reason. And I agree with pp's comment.

hellopoppyseed · May 2011

I think you are doing the right thing by just getting the blood test first. That could really eliminate all concern. No sense in doing more yet. With BOTH of my boys, the doctors mentioned possible problems. With DS1, his nucheal translucency was in the normal range but on the high end. I worried for weeks. The blood test came back no problem. Perfectly healthy baby. DS2- I didn't have the blood work because I had just had it with DS1 and the odds of something were so small. Then the ultrasound tech thinks she sees something on his heart at like 30 weeks. They did an extensive high tech ultrasound. The bloodwork would have told us but I didn't have it. Anyway another completely healthy baby. Now days, these tests are so sensitive it's ridiculous. They didn't have tests like these when we were born. They are made to pick up on everything. But that's why there's a range. Ill bet there's nothing to worry about and you are going to look back and be a little mad that something like this caused you so much worry. That's how I felt anyway.

mandymack · May 2011

Mc_Newlywed:
For me, I think the decision is made easier by thinking of it this way -
What would you do with the results from the amnio?
If you think you would consider terminating the pregnancy (and you certainly don't have to answer that question to me or anyone else) then yes, I'd get the amnio.
If you know for certain you wouldn't terminate, then having the results from the amnio would only serve to inform you about the baby's future and give you time to read up on the possible scenarios. In that case, I personally don't think the risks of the amnio are worth it. You can always read up once the baby is here.
But that is just my opinion and perspective so take it with a grain of salt

I absolutely agree.

I know some prefer to have all the information they can get and while I absolutely respect that and understand that perspective, I personally tend to feel too overwhelmed and find myself not able to quiet my mind and focus on having a healthy pregnancy. For these reasons, I turn down ALL testing (for both pregnancies) because I know, for us, we wouldn't terminate and have a strong support system to deal with whatever God gives us.

I'm so sorry, I know your head is spinning. I hope you can find some peace to be able to think it through and sleep on it and eventually come to a decision you are confident in. Best of luck!

JAM2000 · May 2011

rmj80:
Just out of curiousity, is this an OB you have built a repor with and trust? His/her responses sound flippant and a little unprofessional to me. Coming from someone who had a QUACK for an OB with my first three pregnancies, I might search for another doctor or at least a second opinion before I got an amnio.

I've been going to this dr for a few years. She was my dr when I was pg with my son and delivered him. She is just very clinical- very statistical, etc. Which is good, but all her info is just little overwhelming.

Ya, know. Not that I would wish this but if these results were worse- I think getting an amnio would be an easier decision. I would prob be more likely to just do it. Its the fact that she presented me with an amnio m/c rate of 1:500 which is just slightly worse than the 1:532 nuchal range is what makes this such a hard decision. Does that make sense?

ilovelife · May 2011

I must've missed your OP. Just wanted to give you hugs. I honestly have no idea what I'd do in your shoes. If it helps, I had a 1:127 of having a baby with downs. I declined the amnio and just prayed for the rest of the pregnancy that my son will be ok. He ended up being a perfect baby.

How accurate is this test? Don't they just measure the fluid in lo's neck? (I'm trying to remember).

susanmosley · May 2011

Think about what can cause an amnio to cause a m/c, you know? It is often directly related to the work of the doctor. So it kind of goes back to your trust in your physician, to some extent - I am fearing getting flamed for this for some reason - but does your doctor/hospital have plenty of experience, a good record thus far with the procedure, etc. Just because the risk rate is X, doesn't mean that is exactly the chances for you. You have to look at YOUR risks, not just the statistical data. I'm not sure this is making sense.

hellopoppyseed · May 2011

Seriously though, if this is based on that nucheal measurement from the ultrasound, it is not all that accurate. My last OB says he doesn't even know why they do it. The labs will be far more accurate and I bet they will put your mind at ease.

zeesbride · May 2011

I really feel for you. I would be going nuts over those statistics too. The only thing I can say is trust your gut. Also post away here! This is a board full of intelligent and compassionate women, we dont mind talking through these things! GL!

JOEBunny · May 2011

My NT results were 1 in 3. My friends where 1 in 600, she is 39 and I was 36. She had a baby with DS and I did not. The NT scan is a screening test. 1 in 532 is about normal for a person of your age, but my results with my DD at that age were 1 in 3000+. I think you have to decide based on your comfort level. I won;t ever forget the conversation I had with my friend, whose son is close in age to mine, about our NT results. She said that if she had questionable results, she would have further testing. She did not have questionable results, so had no further testing. I had questionable results and did have further testing. I would never have another child without having a CVS, just wouldn't. The CVS/Amnio is not a big risk in my mind, knowing what I am faced with, at least as much as I can know is.

Only you can decide that. I have several friends with children with DS, the other 2 knew there was a high likelihood in advance, but declined further screening. That worked for them, it would not work for me. I also know a couple of people who have terminated at a late date. I don't know why, I don't think it is my place to ask, but I suspect that genetic problems discovered at the 20 week ultrasound where the reasons. Personally, I would like to know as much as possible as early as possible. I am grateful for the opportunity.

Mrs.Hizzo · May 2011

So if I'm understanding you, your results are exactly the same, but someone decided to classify it as "intermediate" instead of "low," and because of that your OB is pushing an amnio? That seems very arbitrary to me.

Like I said in your original post, your numbers mean there is a 0.18% chance that something is genetically wrong. That hasn't changed. You could argue that someone has to be in that 0.18%, but the odds are overwhelmingly in your favor.

Amnios are very safe these days when done by an experienced perinatologist. They tend to have much better track records than the national average. Just something to keep in mind.

If it were me, with those numbers, I would absolutely wait for the 16 weeks blood work results. But if you're very upset and worried, it might be worthwhile to consider going ahead with the amnio, just to put your mind at ease. You won't get the information much earlier since most places want you to be at least 15 weeks for the procedure, but at least it would be conclusive.

eaglesfan700 · May 2011

TobeMrs.Shavers:
Mc_Newlywed:
For me, I think the decision is made easier by thinking of it this way -
What would you do with the results from the amnio?
If you think you would consider terminating the pregnancy (and you certainly don't have to answer that question to me or anyone else) then yes, I'd get the amnio.
If you know for certain you wouldn't terminate, then having the results from the amnio would only serve to inform you about the baby's future and give you time to read up on the possible scenarios. In that case, I personally don't think the risks of the amnio are worth it. You can always read up once the baby is here.
But that is just my opinion and perspective so take it with a grain of salt
I absolutely agree.
I know some prefer to have all the information they can get and while I absolutely respect that and understand that perspective, I personally tend to feel too overwhelmed and find myself not able to quiet my mind and focus on having a healthy pregnancy. For these reasons, I turn down ALL testing (for both pregnancies) because I know, for us, we wouldn't terminate and have a strong support system to deal with whatever God gives us.
I'm so sorry, I know your head is spinning. I hope you can find some peace to be able to think it through and sleep on it and eventually come to a decision you are confident in. Best of luck!

Ditto MrsShavers exactly. I am so sorry you are going through this. All my best for a happy and healthy pregnancy!

passar3588 · May 2011

Your numbers are actually very good. My risk was 1:166 with my third child. That number was based on my age and the fact that I had a soft marker for DS. I found out about the soft marker at my 20-week u/s. I saw a perinatologist for another u/s who told me that he would do an amnio, but reminded me that it was more likely than not that I would have a healthy baby. I declined the amnio. I saw one of the best perinatologists in the area and completely trusted him and I still didn't want to risk the amnio. Wasn't worth it to me.

I never had any bloodwork done for any of my pregnancies. My feeling always has been that the numbers really mean nothing. If your numbers are 1:4, there is still a great chance that nothing is wrong. And if your risk is 1:1000, there is still no guarantee that you will have a completely healthy baby. I made the decision based upon whether or not I could live with myself if something happened to the baby as a result of the amnio, which I had control over. I decided that I couldn't and that I'd rather wait and see. My son was born perfectly healthy.

I hate to be crass, but the only reason I would have an amnio is if I was absolutely certain that I would terminate in the case of a chromosomal abnormality. And I was never certain that I could do that.

almostjennifer · May 2011

My brother's wife was told after the NT that their chances for DS were very high. We were all devestated and prepared for a special needs baby in the family. Their son was born healthy and normal. These tests make me crazy.

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