NT scan shows high-risk for one twin and not the other but identicals

Hi all

I'm 12 weeks 1 day pregnant with di/di identicals. We know they're identical because they're an IVF pregnancy and only one embryo was replaced.

The NT scan showed one twin with abnormal nuchal fold of 3.3. The other not a concern at 2.3. I'm 32 so this gives me a combined risk of 1:40 for chromosomal problem. All other aspects of the scan seem fine although she couldn't get a good heart picture of the "subject twin" and nasal bones present in both.

Does anyone know how this can be? I'm going out of my mind with worry. How can one twin be OK and the other not if they're identical in genetic makeup (and we're positive they are). I think we'll go for the amnio to find out for sure but does anyone have any suggestions or stories? We're just devastated with the result and I'm unable to sleep or function with the concern as to what this might mean.

Thanks for any comments/suggestions you may have.

Leesa

 

Leesa - I just wanted to send some hugs. I can't imagine a circumstance where this could happen. What did the Dr suggest? You should also speak to a genetic counselor. I hope you get goos news from the amnio. Take care - the odds are in your favor.

 

Hmm, I can't imagine how that could happen either. I would be crazy with worry too! I have noticed that there is a lot of false positives on those NTT scans, so maybe this points to them both being ok? I hope that your doctor or genetic counselor is able to give you clearer answers soon. You should try googling false positives on NTT scans, you'll be amazed at how many there are...

 

Leesa,

:hug99: Many hugs to you! :hug99: My situation is a little different than yours as I had identical mono/di twins, so I'm not even sure if it's applicable. I also was diagnosed with TTTS at 17 weeks, so that may also be a part of this problem. At 13 weeks they noticed a difference with my babies and at 16 weeks they noticed that one baby had a curved spine, which may not allow the babies organs to develop and the other baby looked completely healthy. The way the doctor explained it to me was that when the egg split they didn't believe that the baby with the curved spine (they think she was missing vertebrae) got everything she was supposed to get. They said over and over that it was nothing that I could have done and it would've happened when the egg split, before I would've even realized I was pregnant. I don't want to alarm you, b/c I know that my situation was not the exact same as yours, considering the TTTS diagnosis. It may just be something that you want to ask your doctors about.

I'm praying for a positive outcome for you and both of your babies! Please keep us updated. Hugs!

Jenn

 

BIG hugs to you!! My age put me at risk when I was pregnant as well. Everyone is different an makes their own decisions, there are no right or wrong choices, but I did want to tell you things that made a difference to us.

Number one, we had to decide that if anything could be proven to be wrong, would we abort....both of us were no with this. That really was the decision right there...if we wouldn't do anything about it, why take any risk just for an advanced knowledge.
My dh said the sweetist thing and I'll never forget it....not sure he even knows how much it meant to me but he said that we would take anything that God gave us.

Amino does carry a risk of miscarriage, which is increased with twins since your doing 2 babies....we had already lost 3 pregnancies and were not willing to do anything to risk the two miracles we were now carrying.

I wish you the best and pray that your babies are both fine and healthy.

 

I wouldn't bank on these results being correct. I REALLY cannot stress that enough.

I opted out of these tests cuz I figured it was pointless. I was not going to abort anyway so why worry needlessly throughout the entire pregnancy?

I think you should try hard to let this go and WAIT. I would NOT do an amnio unless you are going to abort that fetus.

These tests are OFTEN wrong and cause unnecessary worry.

That makes NO sense that they are ID and one came back this way... adding even more to the chances that these results are not correct.

TRY to relax now and ENJOY this time. If you are even considering aborting that fetus-- then you should be proactive and find out what's going on. Otherwise, try to accept the fact that it MAY be an issue-- and move forward.

 

:hug99: to you; I'm sorry you've been given cause for worry. Pregnancy, let alone twin pregnancy, is worrisome enough. All I can think of is human error. I hope you get the answers you need. :hug99: please keep us posted.

 

They are not perfectly genetically identical because different genes turn on and off in each person and there can be mutations after the egg split. Still, something as big as Down Syndrome in only one twin is very rare because that requires additional or missing genes or gene sequences to occur in one twin. It's possible but, right now, I would bank on the nuchal fold test giving a false positive because that is way, way more likely. I know it's so hard not to worry but try not to stress just yet. :hug99:

 

High NT's can also be signs of other things...not just chromosomal problems. I say this BUT my twins were normal (they are fraternal) NT's so we did no additional testing. It's my singleton I'm pregnant with now that came back with the high NT (3.2mm)

We did opt to do an amnio and our baby boy has normal 46 chromosomes BUT with that info we were advised to do a fetal echo at 22 weeks since a high NT can be sign of a congenital heart (or kidney) defect.

Also many "normal" babies can have a high NT also. Just a slow developing lymphatic system (i think I spelled that right??)

Keeping you in my thoughts!

I just wanted to get the info out there that it isn't always a chromosomal problem...majority of the time the baby ends up being completely fine from alot of boards I've read while going through this rollarcoaster of a pregnancy.

 

QUOTE(**Diane** @ May 28 2008, 03:08 PM) [snapback]797894[/snapback]
High NT's can also be signs of other things...not just chromosomal problems. I say this BUT my twins were normal (they are fraternal) NT's so we did no additional testing. It's my singleton I'm pregnant with now that came back with the high NT (3.2mm)

We did opt to do an amnio and our baby boy has normal 46 chromosomes BUT with that info we were advised to do a fetal echo at 22 weeks since a high NT can be sign of a congenital heart (or kidney) defect.

Also many "normal" babies can have a high NT also. Just a slow developing lymphatic system (i think I spelled that right??)

Keeping you in my thoughts!

I just wanted to get the info out there that it isn't always a chromosomal problem...majority of the time the baby ends up being completely fine from alot of boards I've read while going through this rollarcoaster of a pregnancy.

 

oops, something strange happened in that last post.... :huh:

thank you all for posting - especially you Diane - its so good to hear of someone with results like mine with a good end result. Did you have bloods too or did you opt for an amnio based on your nuchal fold? What odds were you given? Mine are 1 in 44 which seems SO high given my age is "only" 32.

I pray and hope you're all right and that this is a false positive so to speak. I think I will have to do the amnio as there is no way I'll be able to let this go and enjoy this pregnancy without knowing one way or the other. I'll take a heart defect if it has to be that as they are more often than not reparable and often right themselves.

I am beyond stressed about this but for the sake of potentially two healthy babies I know I have to chill until the results are in. It is just SO hard. This pregnancy has been stressful from the get go (IVF, then spotting, then triplets, then we lost one, now this).

thanks all for your thoughts and good wishes. I'll try and stay in touch.

Leesa

 

Sending good thoughts your way. I hope you get the answers you are looking for that will put your mind at ease. :hug99:

 

QUOTE(mum22more @ May 26 2008, 10:43 PM) [snapback]794268[/snapback]
Hi all

I'm 12 weeks 1 day pregnant with di/di identicals. We know they're identical because they're an IVF pregnancy and only one embryo was replaced.

The NT scan showed one twin with abnormal nuchal fold of 3.3. The other not a concern at 2.3. I'm 32 so this gives me a combined risk of 1:40 for chromosomal problem. All other aspects of the scan seem fine although she couldn't get a good heart picture of the "subject twin" and nasal bones present in both.

Does anyone know how this can be? I'm going out of my mind with worry. How can one twin be OK and the other not if they're identical in genetic makeup (and we're positive they are). I think we'll go for the amnio to find out for sure but does anyone have any suggestions or stories? We're just devastated with the result and I'm unable to sleep or function with the concern as to what this might mean.

Thanks for any comments/suggestions you may have.

Leesa



Thank you for your reply in the other forum.... I wish I knew what was going on... I don't know if it helps at all but when we did our NT scan even though there was ot that much of a difference, there was a little. I've also read that although rare, some genetic change can happen during cell division which I'm guessing in theory is possible but I think is very, very unlikely. there also is the possibility of what someone else said... it could be showing other things, too...


Also, I asked the geneticist specifically if we *did* decide to do an amnio if we could only do one, since shouldn't they be the same? She said yes, well, but that in 99.99% of the time. Only very, very rarely do other divisions happen, so I really doubt that happened in your bbs case.

It is very weird... but as we know, these screening tests are far from perfect. Keep us updated and let us know what happens?