Very high NT measurement

[DinoGreen]

Hi all. The thread I didn’t think I’d ever have to or want to write.

I had my 12 week scan today with my second baby. My NT measurement was 5.5 and I have been referred straight to the fetal medicine team for an appointment with the consultant on Friday. I did see a specialist midwife after the scan who gave me lots of information on what it means and what the options are, so I feel pretty well informed right now. Based on the measurement our odds of the baby having downs or one of the other trisonomies are about 50%. If the baby doesn’t have one of these, there’s still a significant risk of some other abnormality such as a heart defect which could be serious or could not be.

DH and I are both agreed that we aren’t in a position to bring up a child with Downs or other significant abnormalities, so if this is confirmed then we will terminate.

My appointment with the consultant is on Friday, and I’ve been told that they will do another scan and that I should hopefully be able to have a CVS there and then, as long as everything is in the right position, and results would follow 3 working days later so around the middle of next week.

I’m just feeling like everything is an absolute minefield right now. I don’t know what I should do about work. I’m off on leave this week but due back on Monday, I was planning on telling them about the pregnancy then but I don’t know if I should now. On the one hand, it seems very private and I don’t really want to share what I’m going through with my (male) bosses. On the other hand, if we do get bad news, I’ll need time off for the termination. I also don’t want to be at work when I receive the call with the results, so will need to work from home that day, so I’m probably going to have to tell them something.

Stupidly, we already told my DS (aged 3) about the pregnancy after we had an early private scan at 10 weeks where everything looked fine. Not going to mention anything else to him for now but already thinking ahead to how I will explain it if we have to terminate.

Then, I’m worrying about the termination itself. The booklet the hospital gave me says that most hospitals can only do a surgical termination under general up to 14 weeks. By the time I get my results, I will be very nearly 14 weeks. The thought of having to give birth to a tiny dead baby while I’m awake is horrifying to me.

I don’t really know what I’m asking in this thread. Just wanted to get all my thoughts down really. I’m sure no one does but I really never expected to be in this position.

[SylvanianFrenemies]

Hi Dino. I'm so sorry that you are going through this.

I had a tfmr in January as my baby had Downs and a number of associated physical abnormalities. I didn't have him til 18 weeks as I opted for NIPT then amnio rather than cvs, then had an unrelated illness. We first knew there might be a problem at the 12 week scan due to the raised NT measurement.

I'd advise you to tell your boss that you are pregnant, but there are concerns for the baby and you are having additional tests. That should be enough to accommodate your need for adjustments.

Hopefully all will be fine.

If you do end up having a tfmr, I can only speak from my own experience and say that giving birth to my baby and spending time with him was a positive experience, which provides us with comforting memories. We were very well supported by the hospital. The delivery was very easy (I know this varies), probably as I had given birth twice before. My DP had originally planned not to see the baby, but changed his mind and was glad to have done so. I could have elected not to see him after he was born, the midwives were very sensitive. I could have delivered him without so much as a glimpse, but chose to go the other way.

ARC-UK have a great helpline, and I think they have info on telling children. We were lucky that we hadn't told our DCs about the pregnancy. I imagine a conversation about the baby stopping growing might be the right level. But one thing at a time.

I really hope you have a good outcome, wish you well and hope my experiences are of use.

[DinoGreen]

@SylvanianFrenemies I really appreciate you sharing your experience. I’m so sorry you went through it all too and lost your DS. I have been given ARC’s details and I might give them a call tomorrow.

[GandTisgoodforme]

Hi Dino,

I am very sorry to hear that you are going through this, and I truly hope your results are good news.

I, like Sylvanian, sadly had a termination but at 14 weeks last October. My little boy had Downs, and his prognosis health wise was not certain either. I initially thought that surgery was the best option as I didn’t want to face seeing my little one, but I changed my mind and I’m very glad I did. Although the experience wasn’t pleasant and to be honest, quite traumatic, I am so glad I spent time with him. He was just a tiny baby, fully formed but just needed to grow more. He was beautiful actually.
The midwifes were brilliant and supportive during my time at the hospital (although I can’t say the same post-termination, but that’s a different matter..). We decided on a private burial as we wanted him close to us - I actually took him home at first as I didn’t trust the hospital to take care of him.
I’m still not mentally at peace with what happened, and I’m not sure I’ll ever be because I missed out on what should’ve been one of the happiest times of our lives - but I do know that we made the right decision for us, and for him.

As I say, I really hope your results are good news, and if you need to ask anything, please don’t hesitate to!

[DinoGreen]

@GandTisgoodforme thank you for sharing your experience also. Although we may yet have good news, in my head I have prepared for the worst already and it helps to hear from people who have been through a TFMR. I still think my preference would be surgical if it’s an option, but it’s good to know that medical management wasn’t terrible for either you or the previous poster. I don’t think I could cope with seeing the baby though. The worst bit about the scan for me yesterday was when the sonographer said she could get a photo for us where the huge NT measurement wasn’t too obvious and I said I didn’t want a photo at all. If I can’t cope with looking at a photo then I definitely don’t think I could cope with seeing the baby.

to you as well and thank you for your support.

[SylvanianFrenemies]

Hope you are doing ok today.

If you get offered another chance for a photo I would gently suggest asking them to put a couple in an envelope for you. If the worst happens you may want to have them down the line, even if you don't look at them.

Just my perspective, and of course you must do what's right for you.

[DinoGreen]

We wanted to keep busy today so took my 3 year old DS out all day to a nearby theme park we have annual passes to. That certainly helped though I still had my moments. Just got him into bed and now the overthinking starts again! The waiting for answers must be the worst bit. Fingers crossed I can have the CVS tomorrow (not looking forward to the procedure itself, but I just won’t look ...) and then we can have some answers by the middle of next week.

Thank you for your advice on work Sylvanian, having thought some more about it I have decided I am going to tell my boss what is going on when I go back in on Monday. I am sure he will be supportive (who wouldn’t be in this situation) and at least then I don’t have to worry about making up and maintaining a story as well as worrying about the issue itself.

[Otto8]

I’m sorry you are going through this. I just wanted to say that I was in a similar position last summer. At the end of our 12 week scan the sonographer said a measurement was higher than normal so we’d need to go to a different hospital for a blood test. As this was my third baby I knew to ask the measurement and she hesitated before saying 6mm; I knew then this could be bad news. I was due to go into work that day and my husband was due to fly for work that day and be away for a week or so. I called in sick until I knew more as we had told noone about the pregnancy, not even family.

Anyway, the blood test gave odds of something like 1:4 Edwards syndrome and I felt like I just knew it was that. I had a CVS and the procedure isn’t too bad but I was an emotional wreck at this time! The waiting was terrible but in the meantime I decided to organise a surgical termination as our hospital only offered medical and I just knew for sure this wasn’t what I wanted. I’m glad we got the ball rolling early as the wait at clinics can be 1-2 weeks around here, even for medical reasons. The results confirmed Edwards.

The surgical termination was the worst day of my life but also a relief to begin healing and moving on. I chose to have a general anaesthetic and it was really strange waking up no longer pregnant and very very sad. We donated our boy to UCL for research, it felt like the right decision at the time and I don’t regret it. I did get an infection but other than that healed physically pretty quickly. My doctor signed me off for 1.5 weeks and I never did tell my work why, but that’s just me.

Initially I didn’t want to try for another baby but as time passed by there was a gap and I felt brave enough and here I am today 23 weeks pregnant. We were offered extra scans and the harmony test and so far baby looks fine. At the scan, with the consultant however, she noted some markers for placenta accreta (the placenta embeds too far into the uterus) and she asked if I had had any surgical procedures as the placenta can embed into the scar tissue. I almost forgot about the termination - i had no idea it could cause problems in subsequent pregnancies - I remember the odds of complications being so low. Anyway, I’ll find out more next week but just to say there can be complications arising from the procedure, but I guess that’s the same for everything.

It’s a tough time I’ll never forget and I really hope you get good news. I remember at the time reading other people’s experiences helped me so thought I’d share xx

[DinoGreen]

Thank you for sharing Otto8. Did you organise your surgical termination privately? I have read that this can be an option and the NHS will pay if they cannot do it themselves. I plan to ask about this at my appointment today.

Like you at the moment I feel like if this doesn’t work out then I don’t want to try again. DH and I were on the fence about whether to have a second child for ages and now I feel like this is the universe’s way of telling me I should just stick with one. But there’s a lot of emotions at the moment and I don’t need to make any final decisions - I might feel differently after time has gone by like you have. Congratulations on your pregnancy and I hope it all goes well for you and the scar tissue doesn’t cause any major issues.

[Otto8]

Yes, we contacted BPAS and got on their waiting list. They called back a few days later with a slot at a clinic not too far from me. They will try to fast track TFMRs. The actual termination I was dreading but honestly it’s fine and by that point I just wanted the whole nightmare behind me. I remember crying a lot! Uncontrollably. But that’s all part of the healing. Give yourself time, you will feel differently a few months down the road.
Try to take each day at a time, if there were no other markers at the scan you may well get a good result. Our baby also had hydrops and a hernia which apparently are markers for chromosomal abnormalities xx

[DinoGreen]

Thank you Otto8. I had the CVS this morning and now it’s just a waiting game. Uncomfortable procedure but at least it was over quickly. The doctor was able to give me some reassurance regarding the termination process and confirmed that if I want a surgical I can be referred to BPAS also.

[primarywoodle]

Hi dino. Im on the jan thread with you, you might have read my previous posts, im the one who has had 3 babies with high nt measurements.

My first baby had the same nt as yours 5.5, she also had a cystic hygroma and hydrops and although the cvs came back clear we were told she wouldnt survive. I did have a medical termination and although it was really difficult i was really scared of the surgical one.

Have you been in contact with arc? They were amazing for info and support. You can always keep coming back here - ive been in this position and its utterly shit and im glad to give support to anyone that needs it. It can be a lonely place.

There are stories on the internet of the measurement being that high and babies being born fine, my dd had one of 3.6 and shes fine but i know it is lower. Did they say anything else during the scan e.g. about hydrops or excess fluid on the stomach or anything? Or is it just the high nt result? Have you had the blood results back?

[DinoGreen]

Hi primarywoodle. I’m so sorry I hadn’t picked up from the Jan thread that you’d been through this too. It moves so fast! I’m sorry for your loss.

I haven’t spoken to ARC yet. For some reason I keep putting it off. I do want to speak to them though, particularly if my CVS results are not good news.

The NT measurement is the only issue they can see at the moment but the doctors seem very doom and gloom as it is so high. I did not have the blood test - they told me I could if I wanted to but there was basically no point because it would come back high risk whatever the bloods said and I would need CVS or amnio either way.

The consultant I saw yesterday said there is only a 10-15% chance of the baby having no issues at all. I’m almost hoping the CVS does bring bad news, because at least then we have certainty. If it is clear, then there’s more of an anxious wait for a heart scan etc.

[primarywoodle]

I totally get that. Our CVS came back clear with my angel dd and it mafe the decision to go through with the tfmr so much harder (unlike your baby there were significantly more indicators of other problems that were increasing though). Did the consultant do a rescan to take another measurement or is it just from that one scan?

I dont know what to say other than its a bloody shit waiting game and theres nothing thats really going to make a difference other than getting a straight answer and i hope that comes really soon for you.

Please let me know on here or pm me if theres anything you want to know or talk about though. Give your little boy some extra cuddles to get you through xx

[Bellasblankexpression]

Hello OP. So sorry this is happening to you.
I didn’t have exactly the same but we found out at our twenty week scan that there was a serious defect non compatible with life.
I had a TFMR and although obviously it was traumatic, it actually wasn’t as bad as I initially feared.
The midwives were hugely sensitive and I found it really helped to talk through exactly what was going to happen before I took the first round of tablets. It took some of the fear away.
We decided not to see our baby, as this was the only way we could cope at the time, but we still opted to have the photos taken and I’m glad we did. I haven’t seen them yet but I think I might want to in the future.
I hope you don’t get the bad news you are fearing but if you do, and I know it sounds trite but I really firmly believe it, you will get through it and you’ll find you’re stronger than you know. And whether you chose to see your baby or not, it will be the right decision for you and the midwives will respect you.

I echo other posters re telling work but telling them there are potential complications. One thing I cannot reinforce enough is that you absolutely mustn’t rush back to work if you have a TFMR. I
Made that mistake as I thought I needed to go back to normal and it actually meant it affected
me mentally much worse than I expected as I didn’t give myself time to recover.
Sorry that was quite long! I will be keeping everything crossed for you, I know that the waiting is actually one of the hardest bits as you can’t really plan or get it straight in your head.

[JO138]

This is my first post on mumsnet but reading this @dinogreen I could be reading about myself. I had my 12 week scan last week and immediately the mood in the room changed. The sonographer left the room and got a midwife. Our NT was 6.1mm. I hadn't received my bloods yet but we were booked in for a CVS at St George's the next day. Unfortunately later that day the call came that my bloods were bad. 1 in 2 chance of downs syndrome. I've had the CVS now and am in the horrendous waiting game.

We also debated a second and thought we'd just stop using contraception and see how it goes. I'm 39 and have a 3 year old at home. This was kind of our "last shot" so when I was pregnant in 3 mths I was over the moon.

I am terrified of what will come and having to go through a termination. I will be 13 weeks tomorrow so things will move very quickly .

Results are to come back between Tuesday and Thursday. I have little hope for a good outcome.

I'm so sorry that you are also in this terrible position. As I type this I am sat on the drive with a car full of groceries, little boy sleeping in the back just having a good cry.

X x x

[RedSheep73]

I'm so sorry this has happened to you. We had this with our first pg, which turned out to have Edwards syndrome. It is a totally shit situation but all you can do is get through it the best you can. I had a termination around 14wks, surgical, I'm sure they will do everything possible to get it done that way if it comes to that. They have to have a cutoff somewhere but no one wants to put a woman through labour if they don't have to. It's one of those situations where all the choices are awful, and you have to go for the least worst option, and remind yourself on the bad days that you did the best you could with the options you had.

[DinoGreen]

It helps so much to hear from others who have been in my situation, thank you to all those who have posted. I don’t know anyone who has been through similar in real life (at least that I know of - I appreciate some might have and not told me) and it does feel like a very lonely time.

@JO138 I’m very sorry you are in the same situation as me. I am 13+1 so we are pretty much exactly the same gestation and I’ve been told to expect my CVS results on Wednesday or Thursday. I have had a lot of tears too. Are you at work as well or at home with your DS? Although I’m dreading telling my boss at work tomorrow, I’m actually kind of looking forward to being back at work to distract me. I’ve been much better over this weekend when I can keep busy. Please do post here whenever you want to.

@Bellasblankexpression thank you for sharing. How long did you have off work after your TFMR? If I have to have one, I’m thinking of asking to be signed off for 2 weeks but I will see how I feel at the time.

@RedSheep73 I’m sorry you went through this. I’m relieved I’ve had reassurance from the consultant that I can have a surgical termination through BPAS if I want one. I hope there aren’t lengthy waiting lists etc. If it’s bad news, I just want it to be over with as quickly as possible.

[Bellasblankexpression]

I had a week off. I was very very hormonal for the first week afterwards as you still have the labour high and then the crash, perversely. After that I just felt lost and struggled to get motivation to do anything and really should have been at home - it’s a total blur now.
But it did get easier. I would say 2 weeks minimum really and then see how you go. I really hope you don’t have to go through it but you’ll get so much support on here if you do. Sorry to everyone else in the same position too.

[JO138]

@dinogreen we seem to be in a very similar, totally shitty, boat. I don't know how you are feeling but I felt after the scan I had kind of wrapped my head around it. The hospital staff were very much black and white. At one point they said to me "we don't want to give you hope". My husband and I were very much convinced that the writing was on the wall and the cvs was kind of a formality. But then at the cvs the staff was very different. Telling me not to pressure myself to make a decision and that if it was negative for chromosome issues then babies with high NT can be born healthy. Total mind f@£k. I just don't know if I should have any hope or just prepare myself for the worst! I work full time but I've not been in since the scan and I've told them realistically not to expect me for a couple of weeks. They have been nothing but understand thank heaven because I don't need any more stress.....

@redsheep73 do you mind if I asked where you had your surgical termination? My hospital is saying that wednesday (13w+2) is my last chance due to staff holidays (WTF?!) and that the next week is too late because they don't perform surgical past 13w+6

[DinoGreen]

@JO138 my experience has been that the staff throughout have tried not to get my hopes up - at my CVS the consultant said there’s probably only 10-15% chance of a healthy baby. However she said if the CVS is clear and there’s a heart problem then this might be treatable so just need to take it a stage at a time.

I have told my boss this morning and he was very sympathetic and told me to do whatever I need to do whether that’s go off sick, work from home or be in the office. At the moment I’m pleased to be here getting stuck back into work.

If you don’t have good news, do ask your hospital about having a later surgical termination elsewhere if you want one - that’s what I’ve been told I can do and the NHS will pay for it.

[JO138]

Thanks @dinogreen. As I am sure you know it's been the most difficult time. I feel a bit all over the place. I called the hospital again this morning and again they told me if the results came in tomorrow I could get a surgical procedure otherwise I am only have the option of a medical induction. That to me is my absolute worst nightmare in this already nightmare scenario. I said to my husband that I can't believe that I am pushing to receive what will likely be up there with the worst news of my life. It's such a strange feeling to be wanting this news to come in because not getting it could actually make things worse.

The midwife just told me that I have to wait until tomorrow and she didn't offer me any alternatives.

I have seen some information about ARC and I am going to call them later today and see if they can offer me an alternate option.

I'm glad you are stuck in to work and I hope you are holding up. I know there isn't a lot to be positive about a the moment but maybe we'll get really unbelievably lucky....... Take care.

[Conorgog]

I am somewhat in the same boat, this is my second pregnancy, no problems with the first, am 34yrs old and am 12+1weeks. We went to have the first scan Friday and got a reading of 6.4 for the Nuchal and combined with bloods have been given odds of 1:2 for downs with other markers such as absent Nasel bone, enlarged 4th ventricle and a leaking heart valve.

Luckily they could fit me in and I had a cvs same day - now waiting for the results but have preemptively booked in for a termination next week if the results come back positive (power to those who go onto to have kids with chromosome disorders, but my personal view is I just couldn’t cope).

I feel awful that we are in this position, even if the Down’s check comes back fine the other problems just won’t make it okay, am feeling very sad!

[Karigan195]

I have seen people saying this about the NT test so many times and then everything turns out to be fine.

I do not trust the NHS NT test. It is not very reliable. You can opt to have a far more reliable NIPT test. This is private but well worth the money as you can a far more reliable answer within 7 days.

That is what I did. Had to put it on credit card but for peace of mind it’s worth every penny.

Until you’ve had further tests either amniocentesis, NIPT or whatever you choose I would presume baby will be fine simple because of how unreliable the NT can be.

[JO138]

@Conorgog I'm so so sorry that you are in this position as well.

We had the 1 in 2 risk with the combined bloods and the 6.1mm NT but as far as I'm aware they didn't look at any other markers. The scan paperwork I had said heart not examined.

Waiting for the CVS result is horrible. I have called today but they've told me it could be as late as Thursday so i am just waiting......

I hope you are doing as well as can possibly be expected. Thinking of you. X x

[Conorgog]

Thanks @JO138, honestly such a shitty situation. I too felt like we now (after the three scans we got on the same morning and bloods) have all the info and the cvs was just a formality - I’m now just preparing myself for the absolute worst/be given the relief that I can be confirmed to have a termination next week.

Thinking of you too, il be checking back to see how you get on.