High Nuchal and fetal hydrops - experiences please

[GaryWilmotsWedding]

Hi all

Had our 12 week scan yesterday and unfortunately had a very high NT measurement of 4.6mm and saw in the notes when we got home that the sonographer also detected hydrops in the abdomen. As this is our second child we both knew immediately the nuchal fold did not look right. Heart appeared fine and moving normally. Growth almost exactly in line with where I thought I was based on dates.

Before we had seen the notes I was doing ok at keeping calm but having read up since then I am feeling a bit hopeless. It seems very unlikely our baby will survive and that we may very well have to play a part in deciding the timing of his or her death. I have an appointment for a CVS on Friday morning and obviously will know more next week, but I was wondering if anyone could share their experiences if it's not too painful? I'm not looking for stories of miracles (although of course it would be great to think there is some hope) but rather I feel so uncertain about how the next few weeks are going to unfold and would be very grateful to hear how things happened for you.

Something else to mention: I had a very strange rash at 8 weeks pregnant that I did go to my GP about but they felt it was nothing to be concerned about if it resolved in a few days, which it did. It was all over my body and caused my face to swell up considerably. I was very tired and extremely itchy. I am now concerned I may have had Parvo virus but mentioned it to the midwife this morning and she just said to discuss it with the doctor on Friday.

I spoke to ARC yesterday who were fantastic - clear, informative and calm. Despite this and the reams of info on Google, I still feel I am in an information black hole so would appreciate any experiences you could share.

Hello OP,

I'm sorry to hear you had an abnormal scan. I had a similar experience with my first pregnancy, when my 11 week scan detected hydrops and a high NT score (in my case over 6mm). My consultant said likely causes were heart problems, a chromosomal disorder, or a virus. I was actually disappointed when blood tests ruled out parvovirus in my case, because some (although not all) babies affected by this can and do recover.

A CVS picked up Turners Syndrome, a chromosomal anomaly that has an excellent prognosis for babies who survive to birth - but unfortunately not many do. I chose to terminate the pregnancy at 15 weeks as the hydrops and NT measurement kept dramatically increasing, and I was advised that the chance of my baby surviving to birth were close to zero. However, I am glad that I waited until I had a very clear prognosis before I ended the pregnancy, as it made it easier for me to come to terms with my decision.

I'm sorry this is not a positive story, but as I understand it the prognosis will depend on the underlying cause of the hydrops and elevated NT, so I will keep my fingers crossed that you have a happier outcome. I'd raise your concerns about parvovirus with the Dr at your appointment for your CVS and see if s/he thinks a blood test might be worthwhile. It's horrible no knowing what the cause is.

Best of luck xx

Thanks so much offbeatgirl, I really appreciate you posting. I'm so sorry it wasn't a positive outcome for you, and I don't mind at all that you don't have positive news for me - I'd rather be informed than given false hope. Even though my husband and I are doing well at supporting each other, I still feel quite lonely and it's very comforting to hear from people who have been in the same situation.

Can I please ask about the termination? Obviously please don't feel any pressure to answer if it's too painful, but right now that's the part of all this I am coping less well with. I have had a lot of friends who have had problems conceiving, missed miscarriages etc so for me the likely loss of the baby is less of a shock; sadly it's been a constant feature of my friends' and relatives' lives. I am however truly frightened of potentially having to go through a medical termination and actually give birth. I had naively thought it might be less painful etc if the baby was not full term, but from what I have been able to bring myself to read it seems it is not. I am concerned we will have to wait weeks for a diagnosis and then have to have a termination anyway.

The idea that the baby is struggling on is very distressing and I must admit to some thoughts I am not very proud of. 1) I wish it would just end now and not have to be my decision 2) I want it to end as soon as possible so we can try to get on with our lives and, in time, try again. I feel like I have written the baby off already and feel ashamed of myself for having these thoughts.

Like you I am holding out for the tiny possibility it's parvovirus and therefore potentially treatable. Luckily I have managed to convince the hospital to test some blood they are holding from my booking in appointment and the results should be available before Friday. An infinitesimally small chance it is that, but as it seems they weren't going to test I am pleased we've made some progress there.

sorry for the long post, it really is helping to organise my thoughts. I appreciate you replying - it's made a real difference.

gary i am so sorry to hear what happened at your scan and sending thoughts your way. not quite the same thing but we had abnormalities detected at our 20wk scan after a clear 12wk scan. fortunately for us it is an undeveloped leg and club feet so all correctable.

i am just writing to say that i had an amnio after the 20wk scan to check for chromosonal issues (luckily all fine) but up until the amnio and results i did a lot of investigating and i am sure the cut off point for erpc is 16wks.

i underwent an emergency erpc just before christmas for a mmc following failed medical management and it was such a straightforward procedure. i experienced no pain and very light bleeding (although the light bleeding could have been due to the complications i had had). it is also over very quickly and i felt i had closure afterwards. if you end up in that situation u may have to fight for it but it is an option. from what i could gather on the internet mary stopes will do it even later if u opt to go private. hope that helps a little but fingers crossed u get a positive outcome and dont need that info.

So sorry op.

Just been through similar at 14 weeks. Medical management - Erpc not recommended later than 12 weeks according to my consultant.

Life is totally shit sometimes x

Hydrops doesn't have a good prognosis I'm afraid.

Sorry to hear this by the way.

in that case my info could be incorrect or it may take into account whether you would want tests etc?

i was clutching at straws incase the worst happened so maybe worth checking with your hospital / mary stopes if you would be prepared to go down that route.

We had a NT >6mm but no hydrops. She is now 4 and fit as a fiddle. This is a rare scenario though, we know how lucky we are. It was an anxious pregnancy and though we didn't have to face up to deciding about termination in the end, I had lots of horrible thoughts I wasn't proud of when waiting for CVS results. This is normal. Go easy on yourself.

I'm so sorry you have had bad news at your scan.

I have no experience of these abnormalities but I did have a tfmr at 22 weeks as our dd2 had T18 (offbeatgirl do I possibly know you from the arc forum?)

I can give you information about the termination process. As we were past 21 weeks I had to go to kings and have an injection to stop her heart. I would advise, if you make the decision to terminate and have the option, to do things before this cut off. We didn't have a choice but this was easily the most distressing part of the process.

After that our local hospital gave me a hormone pill to take then I went home for the rest of that day and the next. 2 days later I went in to start the induction process.

I have given birth to a 8.3lb dd1 before. The labour pain with dd2 was intense as it was an induction however, it wasn't quite as bad, was much, much shorter (4 hours start to finish) and I had morphine which really helped. They also made an epidural available to me if I'd wanted one.

I didn't have a choice about this process but knowing what I know now I would probably still opt for a medical management. Yes I went through labour pain but the benefit was that I got to spend some time with my dd, we have photos, hand and foot prints and a memory box. All of which has massively helped the grieving process for me.

However, it is a very personal thing. What I found helpful and therapeutic about the process others may find incredibly distressing.

If you do get bad news (really hoping not) then make sure you make the right choice for you.

Oh and please don't be ashamed of those thoughts.

I remember as I walked into kings for our injection I said to my dh that I hoped they were going to scan me and find shed died. Either way she was going to die, I just really wanted the choice and decision out of my hands.

It's a perfectly normal thing to wish for in these situations.

You are all so kind, thank you. I really appreciate the detail kitty, it must be painful for you to recall but it is really helping me to be prepared. I also said today that I hope we find the baby has died on Friday. I'm so sorry for your loss.

Thanks for the info ginger and so sorry you've experienced this too trooper. Yes, life can be totally shit! I'm very aware I am lucky enough to already have a lovely little girl and I know that is much more than many facing this situation have. cheery I'm so glad you had a positive outcome, thanks for sharing. Thanks also for the comment about going easy on myself. you learn quite a bit about yourself at times like these and I have to say I've not been pleased with some of the things I have learnt in the last 24 hours but I know I'm only human and it's a normal train of thought.

slipper from what I have read it seems that is the case, particularly when combined with high nuchal. It just isn't to be.

I'm determined not to disappoint myself in how I handle this. I don't mean ignore it and bury my feelings, just that I have a little family I need to carry on for and this is just one of those really crappy things that life throws at you. No-ones fault, nothing we can do. I've been very fortunate that nothing of this magnitude has ever happened to me before and I need to be grateful for that.

My cousin is a pediatrician and it was such a relief speaking to someone who understood it wasn't looking good. Friends and family have been very supportive but you can see they think it's going to work out. Reading your responses has been very helpful - so thank you for being honest and informative, this is helping me very much at a scary time. xx

It's really tough when people don't fully comprehend the seriousness. Explaining it is really hard.

I had a few 'I'm sure it'll be ok' comments. Bless her, my sil, just before getting our test results sent what I assume she thought was a really supportive text saying 'I hope your results are good, if not I'm sure the doctors can do something for her' I don't think my mum had properly explained 'incompatible with life'

I've found the arc forum a lifeline. Full of people
Who have been through the same thing and know bits of the medical parts behind it all.

Op, so sorry to hear you're going through this. We had the same nuchal measurement, 4.6mm, at our 12 week scan with DD 3 years ago, and I'm afraid it ended badly. She had a v rare chromosomal issue which took some time to diagnose but which had a poor prognosis.

I had a surgical termination (erpc) at 17+6 so it can be done later - up to 18 weeks I think, but only by v specialist surgeons at a couple of London NHS hospitals. I'm pretty sure if you go privately through BPAS etc then the cutoff is much later too. Upside: I didn't have to go through labour, downsides: you're in with other people wanting a termination, I found mainly young girls terminating unwanted pregnancies. I also went through a phase of feeling guilty, like I 'owed' her a birth, although that has passed. On balance I'm pleased I chose the option I did but there are no 'good' choices in these circumstances.

It's good to be pragmatic and prepare yourself. And I agree, I wished for a miscarriage so the awful decision wouldn't be on my hands. But bear in mind there might be a good outcome, hopefully the tests can shed some light for you.

Thinking of you xxxx

Fingers crossed for you Gary. Thought I would share my experience with you although unfortunately was the worst possible outcome for us.
Our nuchal scan was fine & I nearly skipped out of the hospital as I'm in my 40's & have had a couple of miscarriages. Fortunately we do have a 3 year old also.
The midwife rang me 3 days later to say I was very high risk 1/23 & I was offered an amnio; by this time I was 15 weeks so said yes as wanted to know exactly what was what. Amnio was on the Friday & on Monday afternoon the midwife rang to tell me my baby had Down's syndrome & scan showed possible heart abnormalities also. I thought my heart was going to leap out of my chest during this phone call; after discussing with my other half we made the heart breaking decision to go ahead with termination.
By this stage I was 16 weeks pregnant; we had to make a decision quickly.
I had 1 tablet to take on Wednesday to switch off progesterone; I guess it's like turning off your baby's life support machine, then on Friday went into hospital for the pessaries which they gave me at 10.30; baby was born at 1.30. I had gas & air which helped so much; I think the hardest thing was taking the tablet on weds as I knew there was no going back after that.
I wasn't brave enough to look at our baby, which I do feel cowardly for, but at the time there was no way I could have done that- or held him- think people who do are incredible.
I know it's going to take a long time to get over this, but at the same time I know I have done what is right for my family.
It is so important to know & be prepared, and I really hope you do not have to go through what we have over the past week. Having said that, all the health care professionals we have seen have been fantastic. I am off work for a while; I think time is the healer in this situation. Also we are concentrating on the child we do have & this is giving me strength to get through.
I really really hope your outcome is different; I do think it is good to be prepared for all possible outcomes & think you are v brave for wanting to know.
Good luck wishing you all the best Gary xxxx

I also have a negative outcome unfortunately. My daughter had a 4.6mm hygroma and fluid on the chest too. I had a cvs, then they found the massive heart problems, then she was diagnosed with Digeorge Syndrome. We terminated on the 3rd of May. Fingers crossed for you. Such an awful time for you. Stay strong

Hi Gary,

I'm sorry that you've gotten this news. You sound like someone who wants facts, which is the kind of person I was when I was in a similar situation.

Firstly, from advice we got from our consultant, a baby having hydrops this early on in a pregnancy is not good and realistically means that the baby's heart will ultimately stop.

We had bad news at our 13 week scan. At that scan our baby didn't yet have hydrops but did have a cystic hygroma. By the next week however the baby had developed hydrops. We got an amnio and a chromosomal abnormality was confirmed, which wasn't of itself fatal but the existence of the hydrops made it a fatal diagnosis.

Hydrops stops organs developing properly. Ultimately the baby's heart will stop but the baby is perfectly comfortable so don't worry that your baby is in pain. He/she isn't. The baby doesn't know he/she needs these organs yet.

We ultimately waited for our baby's heart to stop, which it did at almost 21 weeks. We were in a different situation to you and terminating would have involved having to travel abroad, very different considerations applied. And when we were told there would be a natural conclusion, with our baby's heart stopping naturally, we decided to let nature take its course. It's an entirely personal decision, you and your partner are only answerable to each other and nobody else needs to know anything.

I then had to have labour induced once our baby's heart stopped. As far as I know this process would have been very similar to labour after a medical termination. It was painful, and as it was my first baby/birth it was 16 hours before our baby was born. Basically, pills for inducing labour were first inserted into my cervix and then other pills were administered orally every 3 hours.

It is a very difficult time. While we were going through it I do remember just wanting the facts laid bare, no candyfloss and making things sound better than they were and then coming home and trying to deal with the facts.

Good luck with your decision. You have a tough time ahead of you. I remember at the start I was like, I'm treating this as a late miscarriage, these things happen all the time etc. But I did change my mind. We did name her, we have a memory box, we got to spend some time with her after birth before saying goodbye etc and that all helped immensely with the grieving process.

Bluebell

Hello OP, glad to hear that they're testing the blood for parvovirus - I really do hope that your story has a happy ending. I empathise with how you're feeling - I felt that if the baby wasn't going to survive, it would be better for her to pass away naturally. However, I got to a point where I couldn't face carrying the pregnancy forward in the face of a worsening prognosis. I still think that waiting a few weeks for a clear prognosis was a good decision for me, and meant that I didn't later regret this choice.

The hospital handled my medical termination very sensitively - they had a separate area apart from the general labour ward. My only regret was not taking any diamorphine - I had this when I was later lucky enough to give birth to a healthy son, and as far as I'm concerned it's fantastic stuff: it really did take away the pain and blurred my emotions. If things don't work out and you decide to opt for a termination, I recommend taking all the drugs offered. In terms of pain, I found giving birth to my son at full term far more painful that giving birth to my daughter at 15 weeks. I was also offered support from the clinical psychology team which I found very useful, both before, and for some time afterwards. It might be worth seeing if there's something similar offered at your hospital?

Hello all, long post alert......

Firstly thank you so much for taking the time to write and tell me of your experiences. I am mobile so tricky to scroll back and highlight names, (So sorry, will do this properly when home) but please know I have read every post carefully and so appreciate your wise words. It is a lifeline at an otherwise very lonely time.

So, I got the bloods back yesterday giving a 1:6 risk for down's, which was not a great surprise. We turned up at the hospital this morning for the CVS, actually feeling ok because you at least feel like you're doing something proactive when gathering the facts. Heartbreakingly, they couldn't do the test as the placenta is in the wrong place and would have risked perforating my bowel (which the doc said she 'didn't really want'. Er, no thanks. Got enough on my plate right now!). We have to return next Friday for another go but I am bracing myself for the possibility we will have to wait for amnio instead. I was doing fine until they said they couldn't do it safely, then came the tears of frustration and unfortunately we had to sit in the main waiting room as the side rooms were full. I almost lost it completely when a very kind lady also waiting for her scan asked, with a gentle hand on my shoulder, if I would like some water!

The hydrops were gone and the nuchal measurement slightly reduced with the highest measurement coming in at 3.9mm. I take very little comfort in this because they were there, and we know that means something. Everything else looked 'normal' but it's all too small to tell really. Growth exactly in line with expectations. (although I note a slightly small head, but then DD has a slightly small head because her Daddy does!)

So, the agony continues! The scan was quite extensive and meant we watched the baby moving and stretching for quite a while, which again was heartbreaking. It looked so 'normal'. The thought of potentially another 3-4 weeks before we even have the first set of results (if we need to wait for amnio) is just so frightening. I have a tiny bump developing and feel so pregnant in the evenings. It's such a cruel end to the day and all the effort going in to growing this baby just feels so futile.

I know there are people who would say it might still be ok etc, but the reality is a raised nuchal measurement almost always means something is amiss. It's just we have to wait for all of eternity to find out exactly what kind of bloody awful news we are in for.

Thank you again for your words. You have been there and if you posted at the time on Mumsnet, you will know quite how much it matters that people have taken the time to add their experience. You are all so strong and balanced. I really want to make myself proud in how I deal with this, and you are helping me to keep it together. Thank you so, so much xx

One other thing to add - my blood test indicated low HCG and low PAPP-A, and the consultant said this suggested Down's. From what I have read, this is more likely to suggest Edward's, as Down's usually shows high HCG? I thought the exact results would be in my notes, but now home I find they are not, so will chase and see what the exact figures are.

ok....so they are REALLY low...does anyone have any experience of this? HCG 0.23 MoM and PAPP A 0.28 MoM. Again, that would seem more consistent with Edwards rather than Downs?

Some good news from the scan.

I have to say low hcg and low papp a are more markers for T13 and T18. I was told hcg is usually double the Papp a for a T21 marker.

Your hcg looks similar to mine, a little higher maybe, my Papp a was 0.08. The lowest the specialist at Kings had seen before.

Hi Gary
I was in the same situation last year my daughter eve had a nuclear fold of 7.2 and hydrops eve fought for another 6 weeks but the hydrops got to much and eve died at 18+1 and was born 2 days later please please pm me if you want to talk I'm now 14 +2 weeks with a very healthy baby due Christmas eve huge hugs to you and your partner xxx

Sorry, that info about high hcg and low Papp a being a t21 marker also came from the Kings specialist team. I'm surprised you were given that information.

We had an 11mm nuchal with hydrops. CVS showed trisomy 21 and we had a tfmr at 14 weeks. Surgical management at Marie Stopes- like you I couldn't face medical management. Worth finding out about - they do surgical managements later.
I'm sorry you are going through this.

How awful you are having to wait longer; I can imagine how you are feeling - when you know there is an increased chance something may be wrong you just want to know exactly what's what. The waiting is agony.
I had a normal scan at 13 weeks but bloods & my age gave me a 1:23 risk- hcg levels were sky high & papp-a was very low. Our baby had trisomy 21.
Hang in there xx