Not great nt scan results- any experience?

kellenickle · December 2011

I had my nt scan today and the results came back abnormal (1 in 47 chance of trisomy 21).

Not the worst news in the world, but definitely not the happy appointment I was hoping for. We will be meeting with a genetic counselor, but this won't happen for at least a couple weeks.

I hate the waiting and I really don't want to google. Anyone have any personal experience they are willing to share?

smb29 · December 2011

I had elevated numbers with the quad screen. We were able to see the genetic counselor the next day, I'm surprised you have to wait a few weeks. She talked us through the test results and went over how our family history impacted the numbers. The big thing you have to ask yourself is what you want to do next - would you consider further testing, like an amnio? Or would you be satisfied with something less invasive (but possibly less accurate) like an ultrasound? Would you terminate if it was confirmed trisonomy? Could you go the rest of your pregnancy not knowing for sure if you didn't test? We hadn't really thought about what we would do if the results weren't good. It was really stressful but we decided to do the amnio. I'm a planner and I had to know, I couldn't go through the rest of my prenancy wondering. The procedure was much less scary than I thought it would be. If you do decide on an amnio, be sure and ask for the fish test, the results come much more quickly than the full test.

carlinlp · December 2011

I don't have any experience or advice, just ((((((hugs)))))).

Is there any way you can call and get put on a cancellation list in order to be seen faster? A few weeks seems like a long time.

PrincessBrideSarah · December 2011

I had a 1 in 34 chance of Trisomy 21 with DD #2. This was about 10 times higher than the risk based on my age alone. Her NT measurement was well below the cutoff, so the blood test is what skewed my risk up higher.

I agonized over what to do and ended up doing the amnio at 16 weeks, which showed "apparently normal female."

If you think you want to do an amnio, you have to wait until 16 ish weeks. If your ticker is correct, you are still within the window for a CVS. I think a CVS can be done up until about 14 weeks. A CVS carries a higher risk of miscarriage than an amnio, though.

If you want to do the CVS, you need to get in to a specialist (MFM or perinatalogist) ASAP. My OB did my amnio, but I would have been referred out if we had wanted to do the CVS.

We had no plans to end the pregnancy, but I just couldn't deal with the uncertainty for several more months. If the news was bad, I wanted to know as soon as possible so that I had time to work through my emotions and hopefully make my peace with the diagnosis before meeting my child.

PrincessBrideSarah · December 2011

I also wanted to make sure you understood the math on these odds. You have a 98% chance that your baby does not have Trisomy 21 and a 2% chance that he or she does have Trisomy 21. My number worked out to 97% and 3%, which sounds much less scary than 1 in 34.

I kind of saw my options as (1) get a CVS, (2) get an amnio, or (3) do no invasive testing and wait to see what happens with the anatomy ultrasound at 24 weeks (which is when my practice does them). I was not pushed in any particular direction, and the nurse who had me sign the consent form for the amnio even told me, "You know that you don't have to do this." Unfortunately, I felt like I did have to do the amnio so that I could sleep at night and stop crying.

Good luck with whatever decision you make. I hope that your abnormal result is just a false alarm.

kellenickle · December 2011

Thanks for the responses. I'm such a control freak- the not knowing/not being able to control it is the worst part.

My OB told me the the in depth ultrasound/amino (if we choose to do it) can't be done until 14 or 15 weeks- which is where the wait comes in... Otherwise I'd be stalking that office like it's my job.

PrincessBrideSarah:
I had a 1 in 34 chance of Trisomy 21 with DD #2. This was about 10 times higher than the risk based on my age alone. Her NT measurement was well below the cutoff, so the blood test is what skewed my risk up higher.

This is what ours looked like too. The measurement was good.

Thanks again for sharing.

Mrs.Talala · December 2011

Ditto Princessbride, she's got the numbers right. Remember that this test can't tell you for sure if the baby has down syndrome and even with those numbers the most likely thing is the baby is fine. If you are interested in CVS that is still an option but you would need a referral to a MFM soon. Or you can do an amnio around at 15 weeks. I find it odd that your OB recommended a detailed ultrasound at 14-15 weeks. Frankly that is really early for an anatomy scan. I'm not saying don't do that ultrasound but if it were me I would want a true anatomy scan later on around 20 weeks with a maternal fetal medicine specialist. Can you ask for a genetic counseling appointment sooner so you can learn about all your options and make the best decision for your family?

kellenickle · December 2011

Mrs.Talala:
Ditto Princessbride, she's got the numbers right. Remember that this test can't tell you for sure if the baby has down syndrome and even with those numbers the most likely thing is the baby is fine. If you are interested in CVS that is still an option but you would need a referral to a MFM soon. Or you can do an amnio around at 15 weeks. I find it odd that your OB recommended a detailed ultrasound at 14-15 weeks. Frankly that is really early for an anatomy scan. I'm not saying don't do that ultrasound but if it were me I would want a true anatomy scan later on around 20 weeks with a maternal fetal medicine specialist. Can you ask for a genetic counseling appointment sooner so you can learn about all your options and make the best decision for your family?

It's definitely possible that I have that info wrong. I was alone at the appt and was trying to process and listen and question all at the same time.

I do know that she put the referral into the genetic counselor and that they should be calling me in the next couple days... I do feel like I'm a little more able to think clearly and now I know more what to ask about.

Thanks ladies. I'm feeling better already.

Mrs.Talala · December 2011

kellenickle:
Mrs.Talala:
Ditto Princessbride, she's got the numbers right. Remember that this test can't tell you for sure if the baby has down syndrome and even with those numbers the most likely thing is the baby is fine. If you are interested in CVS that is still an option but you would need a referral to a MFM soon. Or you can do an amnio around at 15 weeks. I find it odd that your OB recommended a detailed ultrasound at 14-15 weeks. Frankly that is really early for an anatomy scan. I'm not saying don't do that ultrasound but if it were me I would want a true anatomy scan later on around 20 weeks with a maternal fetal medicine specialist. Can you ask for a genetic counseling appointment sooner so you can learn about all your options and make the best decision for your family?
It's definitely possible that I have that info wrong. I was alone at the appt and was trying to process and listen and question all at the same time.
I do know that she put the referral into the genetic counselor and that they should be calling me in the next couple days... I do feel like I'm a little more able to think clearly and now I know more what to ask about.
Thanks ladies. I'm feeling better already.

Totally understand! That is a ton of information to process on your own. I can never think of the right questions when I'm with the doctor. I usually go home and think about it and write down my questions so I don't forget them. Hopefully you will get in quickly and get your questions answered.

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