NT high at 3.8mm

(25 Posts)
c4bbage Sun 01-Dec-19 01:03:16

I'm posting here to try and keep my own sanity while also trying to hear similar stories. I've had two miscarriages this year, and I'm currently 14 weeks pregnant. Everything has been fine up until my scan on Thursday which showed fluid behind babies neck measuring 3.8mm and the sonographer wasn't sure if this was fluid or a Cystic Hygroma. I've been googling both of these religiously and I'm honestly going out of my mind and I don't feel like I can talk to anyone about it, I'm so upset and worried. I'm still waiting for my combined bloods to come back (not sure how soon this would be if it was high risk, or if they even work weekends) but after reading others stories it looks like despite blood tests I'll still be high risk because of the NT. I've barely slept, I've been crying so much that I'm being sick and I'm really not in a good place right now. I so desperately wanted this baby and I'm terrified of what the outcome could be. I had a gender scan booked for the weekend after next and I was so excited but now every bit of excitement is gone. I'm being seen by fetal medicine on Tuesday so I'm hoping for more answers, I'd really appreciate some support from anyone who has been or is going through similar.

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Nanmumandmidwife Sun 01-Dec-19 15:42:11

@c4bbage sending you lots of love. You are in a tough place- not knowing is really difficult, made worse by your previous losses. Your combined test results would be likely to be available tomorrow or Tuesday depending which hospital it is & which lab they use.
An NT of 3.5 or more leads us to suggest additional investigations. Bear in mind that we see very much higher measurements (in the teens) so you are only just into the “of interest” category. Also, being fluid, this can change day to day so may measure differently on Tuesday. Which fetal medicine unit are you going to?
There are 3 possible explanations for a raised NT
1. It is normal for your baby & no issues are ever found. Just as people vary widely in height, some babies will naturally have an NT higher than others.
2. A chromosomal/genetic issue (such as Down’s syndrome but there are others)
3. A “plumbing” issue with baby’s heart (major or minor)
Lots of information on these websites www.walkingwithyou.org.uk and www.arc-uk.org
Do get in touch by PM if you want to xx

c4bbage Sun 01-Dec-19 15:55:04

@Nanmumandwife thanks for replying. I'm being referred to the RVI in Newcastle. I don't even know where I could ring to chase up results? I'm considering paying private for the NIPT but don't know if it's worth it or whether to go for the CVS if I'm offered that

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c4bbage Sun 01-Dec-19 15:56:04

Sorry @Nanmumandmidwife I've just realised I wrote your name wrong in my previous post

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Nanmumandmidwife Sun 01-Dec-19 18:00:04

@c4bbage NIPT wouldn’t be my recommendation in this situation as it only considers 3 chromosomal conditions & others are worth ruling out. However, the decision needs to be informed by your view about what the result might mean for you. If you would never consider ending a pregnancy it is a different balance to if you would be likely to do so if a chromosomal issue was found.
There will be a screening midwife at your hospital - ring the antenatal clinic or maternity helpline & they can give you the number.

c4bbage Sun 01-Dec-19 19:54:12

@Nanmumandmidwife thank you, I'd seen a lot of people getting the NIPT and the thought of anything invasive made me nervous but if I'm high risk then I'd rather know what is going on. I'm hoping they will scan me on Tuesday but I'm not sure what they do when you're first referred. I don't feel excited at all anymore at all 😭

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Nanmumandmidwife Sun 01-Dec-19 20:01:00

That makes sense. On Tuesday I would expect them to scan you, see what NT is then & then talk you through the options. Invasive test should be available at same visit if you want it. In almost every case cardiac issues can’t be identified yet unfortunately. Would expect them to offer you specialist cardiac review at 16-17 weeks.
Make a list of all the “what if” questions you have in your head and ask them to go through them.
You will get extra scans etc now, paid for by NHS, so save your money & cancel private scan.
I understand why you feel that the excitement has gone, but still very likely that things will turn out ok for your little one.

c4bbage Mon 02-Dec-19 09:56:57

@Nanmumandmidwife I've called my screening coordinator and my results aren't back yet so fingers crossed they are for tomorrow. I'm calling them back this afternoon.

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Mummylanie3 Mon 02-Dec-19 10:15:26

I had a high nt of 4.1mm at my 12 week scan I'm 35 my combined results came back 1:25 for down and 1 in 60 for the other2 I chose to have amnio as I wanted a deffinente answer I could have had nipt but again it would only give me odds and the way I look at it is if it's 1 in 10 or 1 in 10,000 someone has to be that1 the amnio took about 2 mins to do and got the all clear 3 days later that DD was fine also found out it was a girl I'd say if u want a deffinente answer amnio is the other way if the result wouldn't matter to how you progress or anything like that then don't bother. Amnio is a risk 1:200 I think but that's the national average my consultant who I got reffered to for the procedure had not had anyone misscarrige in over 4 years his odds were in the tens of thousands so I would ask direct rather than going on the national average. Hope everything goes well for you the waiting for results is the hardest part xx

c4bbage Mon 02-Dec-19 12:11:54

@Mummylaine3 your story is reassuring. I've seen loads where people had good outcomes but there's equally as many where people don't which is sending me crazy, I'm trying to stay off Google. We're you offered the CVS as well? And how far along were you when you had the animo?

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c4bbage Mon 02-Dec-19 12:12:33

@Mummylanie3 sorry I spelt your name wrong in my reply above

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Mummylanie3 Mon 02-Dec-19 12:35:25

@c4bbage I was originally going for CVS when I got to hospital I was14+6 so they said they would do amnio instead which freaked me out cos I had researched CVS but the staff was loverly so friendly and reassuring they kept me for 90 mins after to monitor then I went home xx

c4bbage Mon 02-Dec-19 14:53:27

I've just rang the screening coordinators again and still no results back yet sad I hope they're back in time for my appointment tomorrow morning. I'm going out of my mind with anxiety and I'm unsure if I'll be offered any other testing without them

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Mummylanie3 Mon 02-Dec-19 15:11:10

@c4bbageafter my scan I was told I would be high risk as the NT would bump it up anyway so I knew my odds would come back high I told her I wanted invasive testing for a deffinente answer so she sent that referral through then rang next day with my results I had to wait 2 weeks for my appointment tho as I was transferred to another hospital but as I say they came back all clear I have to have a heart scan on Wednesday which is the last bit but that's at another hospital 1.5 hours away I also had a detailed scan with my consultant 2 weeks ago who said everything looked fine and measured perfect so that was reassuring high nt dosent always mean chromosome issues it could be a heart defect or it could be absolutely nothing but they will test everything if you decide it's what you want x

Nanmumandmidwife Mon 02-Dec-19 15:15:37

@c4bbage it is frustrating not to have the result of the combined test, but it is only a part of the information and will not prevent you having the appointment tomorrow and having a test if you decide that’s what is best for you.

c4bbage Mon 02-Dec-19 16:04:58

I've just had my results back which put me at 1 in 73 chance of down syndrome. My results for Edwards came back clear which is obviously great news. I've spoke to fetal medicine and they are giving me the CVS tomorrow. I'm feeling a lot less anxious now as I've seen people with much higher chances come back fine.

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Nanmumandmidwife Mon 02-Dec-19 16:53:53

@c4bbage glad to hear that you have your results now.
1 in 73 chance means 72 in 73 chance that baby does not have Down’s syndrome- that could be a good way to look at it.
Perhaps worth looking at www.positiveaboutdownsyndrome.co.uk to get some real information about life with Down’s syndrome? You may find it is not as scary as you first thought. Very good news that you got a low chance for Edwards & Patau’s because they are both much more severe and life limiting in their effects

cattaxi Mon 02-Dec-19 17:07:43

I hope you are ok @c4bbage. It’s such a worrying time.
I had a 3.9 measurement in April. We opted for cvs over nipt as we wanted something diagnostic & a concrete answer. The results were all clear. We also had a cardiac scan at 23 weeks that was all clear. Ds arrived in October & he’s perfect.
It’s easy for me to say, but do try not to worry. The odds are very much in your favour with that measurement and results.
Take care of yourself, it’s a stressful time.
Good luck with the cvs. Mine wasn’t half as painful as I thought it would be. Just a little discomfort.

c4bbage Tue 03-Dec-19 11:37:34

I decided against the CVS when I got here. Everything looked okay on my scan, and I've opted to have the NIPT done privately (through my hospital, £450!!!) as its 99.9% accurate for down syndrome which is what I'm high risk for. I've decided to get the amnio if it comes back high risk for anything, but I wanted to avoid anything invasive. Thank you everyone for your advice

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cattaxi Tue 03-Dec-19 22:32:00

Good luck @c4bbage

c4bbage Sun 15-Dec-19 15:54:08

Just an update, I got my NIPT Harmony results back and it's low risk for everything, and it's a boy! I'm going for an early fetal heart scan on Thursday so will update the thread then for anyone who reads who is going through similar

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c4bbage Wed 19-Feb-20 21:36:13

Just another update, I'm almost 26 weeks and all of the heart scans at the FMU have been normal. The only abnormality found so far is that he has a cleft lip and possibly palate. I've still decided against the amniocentesis but cord bloods will be taken at birth to rule out abnormal chromosomes that the harmony couldn't test for

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Kate544 Fri 21-Feb-20 08:50:54

Really hope it continues to work out for you @c4bbage - congratulations on your baby boy xx

c4bbage Sat 19-Sep-20 15:42:09

Just another update for anyone who comes across this thread with similar experiences. I gave birth to a healthy baby boy. He does have a cleft lip and palate but he's doing absolutely amazing

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AlviesMam Sat 19-Sep-20 16:17:35

Congratulations I love a happy ending smilexxx

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