HIGH NT but low risk blood results! I'm so confused.

[Becky987]

Hi,
I am 13+2 weeks pregnant and had my scan at 12+3 however the NT was measuring at 4.6mm but everything else looked ok with the baby. The sonographer could not really tell me much apart from that they will fast track my bloods coming back for the DS testings and I have a consultant scan booked at 16 weeks.
My blood results finally came back this morning after a long 5 day wait, they all came back as low risk which is an absolute relief.
However I feel really confused now, will the consultant scan pick anything more up, why would the NT be high if everything is low risk. I am not due to see my midwife until the end of the month so feel like I'm just driving myself crazy with worry for the next 3 weeks until the scan.

[Foreverbaffled]

I’ll admit that is quite confusing. In all likelihood everything is fine but I understand that higher NT can be linked to other things (beyond Down’s syndrome etc) like cardiac issues which is why you have the consultant scan. It’s really good they are checking for other anomalies outside of the three chromosomal issues they screen for. Hope you’re okay.

[Treaclepie19]

I've had this experience. It didn't turn out well for me I'm afraid. Though we wouldnt have known without an amnio.
If you'd like to know more feel free to ask, hope all turns out okay for you

[Becky987]

Thank you both so much for your comments.
@Treaclepie19 Did you ask to have an amino, they have not offered me this with the risk coming back as low. Can I ask what happened with your situation, you don't have to if you don't want to.
I feel like I am more anxious as we have a daughter already so it does not just affect our lives.

[Treaclepie19]

@Becky987 yeah feel free to ask anything, I just didn't want to scare you.

Is it your combined bloods that came back low risk?

Basically our little boy had a nuchal of 5.3mm. They told us with that high nuchal the combined bloods would be high risk, which they were. We had the NIPT which came back low for the main 3. They offered us cvs and amnio if we wanted but we refused until we'd had more scans. Eventually the consultant advised we had an amnio because i was very nervous about the impact on our son if the baby was very poorly. After the amnio was done they saw a glimmer of what might be a heart issue but couldn't say for sure. Everything else on the scans had looked fine.

The amnio results came back with a rare problem. He had deletions of chromosome 2 which is the protein making chromosome. So all of his body wouldn't be developing properly. They told us he was likely to suffer physically and mentally and have seizures which would make things worse, if he survived birth or the seizures that is. So it was a very poor prognosis.
We decided to have a termination for medical reasons and he was born at 22+4.

Have you spoken to ARC? They were very good with me and are knowledgeable on all different conditions and worries.

[Becky987]

@Treaclepie19
Thank you so much, it must have been so difficult for you.
My combined bloods have come back low risk but I have my consultant scan booked at 16 weeks to hopefully be able to shed some light on things further. I did receive a call this morning from a midwife but when I asked more questions about the possibilities she just explained that it could be something further but it could also be nothing but other than that we haven't spoken to anyone else, I'm not due to see my midwife for another 3 weeks either so I just feel like it's going to be the longest 3 weeks in limbo.
We feel a little more positive that the combined bloods came back low risk but then still don't want to get excited about my pregnancy until we know that everything is okay.

[Treaclepie19]

@Becky987 Its really tough. I'd recommend ringing ARC because they really are so helpful. Feel free to send me a message on here or I have a Facebook blog about my little boy if you'd rather message on there.

[Becky987]

@Treaclepie19
Thank you so much for all your advice, I will contact ARC xxx

[Mads12345]

Hi Becky987,
Im currently 12+6 and I am experiencing something similar at the moment. Mine measured at 3.6mm which is only .1 'too high' but none the less a worry. My blood work all came back as normal. Initially they told me it could be a risk of Down syndrome etc but they've recently told me that they may not test for that and just do a scan at 16 weeks to assess the heart. I'm waiting to hear more on Monday as to when I need to see the specialist. It's such a horrible feeling and I really hope that everything works out positively for you.

[Becky987]

@Mads12345 Its such a worrying time isn't it.
I did speak with someone at ARC and found them so helpful. It may be worth you trying to speak to them.
I am due a 16 week scan in a couple of weeks so I'm trying to stay hopeful for that.
I hope everything is going well for you.

[Mads12345]

Thanks so much. I'm seeing a specialist tomorrow morning to get another scan and hoping to get some answers. It's so tough because I feel like until bub is born you don't really know what's going to happen. I will probably get the harmony test done but have been told that that only tests the 3 main abnormalities and that's why the amnio is best, but in saying that my doctor told me yesterday that sometimes with the amnio something will come back not right with the DNA but there's no real way of knowing to what extent and that if 100 random people were tested 25 of them would come back with something wrong with their DNA and they'd probably not even know about it. With my measurement being quite low but still 'abnormal' I'm holding onto some hope but it's so stressful. I just want to enjoy the pregnancy and it takes so much away from such a happy time.

I wish you all the best of luck for the coming weeks, I will keep an eye on this post for some updates as you receive them if you're happy to share and I will let you know how I go tomorrow

[Treaclepie19]

How are you getting on?

[MrsK89]

Hi
When I had my scan at 12 weeks the NT was high so I opted for a Cvs test. During the cvs test the doctor said the measurement was fine and the results came back clear.
They put me down for a fetal echo scan around 20 weeks which also came back fine and they discharged me from the fmau unit.
I am now 27+ weeks with no extra scans, so hopefully good news for you also x

[Mads12345]

Oh I'm so hoping my situation is the same!!! I'm so glad it worked out well for you! Thank you for that! I saw the specialist and they offered the CVS but I went for the NIPT plus blood test and am going back on the 6th of next month for a specialist scan. They didn't scan this time as they said they were only going to scan if I was getting the CVS. The NIPT plus test is the same as the standard one but instead of screening for the main 3 chromosome disorders it looks at all 22 chromosomes. The specialist then told me after I did that that sometimes with the NIPT plus test because it looks at all your chromosomes it can flag some things that they don't really understand so they normally don't opt for their patients get that one but none the less it's done now. I will get my blood results back early this week coming

[LouH1981]

Hi there, my son had an NT of 3.9 and my bloods came back as a 1 in 5 chance of Downs.
I had to wait until 17 weeks for an amnio because they couldn’t do the CVS and that was negative and he was born perfectly healthy. (Now 5 yrs old snoring in his Thomas bed!)
I’ve since spoken to a couple of midwives about this whilst pregnant with my daughter and one mentioned that if Mum has been unwell (virus, cold etc) sometimes this alone can temporarily increase the NT.
The GP when I asked if my daughter was likely to have the same issue said ‘yes possibly it could just be how you carry your babies’ (DD’s was fine) Don’t forget it is just a marker and doesn’t on its own mean that there is definitely a problem.
Fingers crossed all is well. I know the waiting game is horrendous but just try to stay off google, it will pickle your brain xx

[Mads12345]

Wow that's incredible and very reassuring! Google definitely does pickle your brain, so many mixed messages. I can't recall being unwell at all but I guess sometimes you can have a virus and not even know if. It's so hard to find information and stats on this type of situation so it's wonderful hearing other peoples experiences x

[Becky987]

Sorry for the delay everyone, I have not had any internet for the last few days.

@Treaclepie19 I have my 16 week consultant scan the week after next so I'm hoping all comes back OK with this. Other than that it is just a waiting game at the moment, I did speak with ARC and they were a great help and reassurance but other than that I've had no word from the midwife or anyone else until my scan.

@Mads12345 Keep me updated with how your getting on, I will keep my fingers crossed for you.

@MrsK89 That's such good news, I'm hoping that's the outcome I get from my 16 week scan.

@LouH1981 That's reassuring to know, I don't recall feeling unwell at the time apart from the usual pregnancy symptoms. I have come back as low risk for DS and the 2 others they test for. So I just have to wait for my 16 week scan with the consultant to check everything else.

Thanks for all your updates, they are very reassuring at a very worrying time.

[Worriednewmom]

Hello!!

I’m currently going through this.. had my first scan and she said one picture the nt measured 3.5 which is the point they have to refer you. My bloods come back 1 in 4000 chance for downs, Ed & pats so that was really reassuring. I’m waiting to see if Fetal med want to see me now. It’s such a worrying time. I’m convinced it’s some what to do with the way the baby is laying and the measurement is a little off! Glad everything is ok for you all x

[Mads12345]

I'm so sorry you're experiencing this. It sucks but your measurement isn't bad so try not to stress and hopefully everything works out! Update for me, I got the nest plus teat done and everything has come back all clear! We have a scan on the 6th to look for any other abnormalities but all is looking good so far x

[LittleTreasures987]

I am booked in for my Amniocentesis on Monday. I also had my consultant scan today and they need to see me again in two weeks time to check on the heart again as it flagged up that there may be a small hole between the two bottom chambers.
Very worrying but we are still staying hopeful at the moment until we get anymore news.

[Worriednewmom]

So sorry you are going through this.. it’s such a worrying time. What was the NT? I really feel there should be more support around people who have this as a high reading or a high chance of other things when bloods come back. Praying everything is ok for you xx

[LittleTreasures987]

@Worriednewmom
Thank you so much. The NT was 4.6 so quite high really.
I did speak with ARC but other than that I have not had much contact from anyone with regards to it all. Although the consultant I met with yesterday was lovely and very reassuring.
I hope all is well with you.

[Worriednewmom]

Hopefully everything goes ok for you! I have been waiting over a week and still haven’t heard from Fetal med, apparently their very busy as lots of consultants are off.

Hopefully things will work out for you and you can enjoy the rest of your pregnancy! Fingers crossed! Thinking of you xx

[LittleTreasures987]

Thank you so much.
Hopefully they will be in touch soon, waiting to hear something is the worst.
I hope everything works out for you too. Let me know how you get on xx

[Worriednewmom]

Hello..
I have my scan booked in for next week at Cardiff so we will see what they say then. Does anyone know if partners are allowed with you now? It didn’t say on the letter and I can’t get through. Fingers crossed all will be ok! Xxx

[LittleTreasures987]

Oh that's good, at least you've heard something now.
When I had my scan last week my husband was not allowed in, however I'm having an amnio next week and I called to ask if he could come in with me because I'm so anxious about it and they said yes. So it may be worth a phone call to ask.
I hope you go on ok next week xx