Raised NT, Hydrops, CVS

[Sleepy2401]

I have been lurking on these pages for a while but after a nightmare 2 years of TTC and now an extremely poor prognosis, I have seen how supportive people are on here so wanted to share what’s going on.

I have one son who was conceived with no complications (actually by accident!) and had a very straight forward pregnancy until 34 weeks. He then stopped growing and had oligohydramnious, at 37 weeks after a scan, I was told I had nothing to worry about (after hearing the conversation between the consultant and midwife that it was concerning and I need inducing before 40weeks). Without discussion, they booked me for induction, I asked for a CS as I was now considered term and just couldn’t shake the feeling something was deathly wrong. The following day at 37 weeks 1 day, I was rushed in with an APH and placental abruption which ended with a Cat 1 EMCS. Thankfully my son survived and is now a happy and healthy 3 year old.

2 years later we decided to TTC a second child. We’ve really been through it with 4 losses from 5- 11+6 weeks. We’ve been seen at our local hospital and had all the tests they offer, I also managed to get a biopsy and NK cell testing and they have told me everything is absolutely perfect! Due to what happened with my son, I connected the dots that maybe I needed blood thinner and progesterone in pregnancy (all the tests are when HCG is 0 so not in a pregnant state). The consultant agreed that we would try.

Success, our 5th pregnancy (this is all the same partner as I know sometimes that can change things) and we make it to 12 weeks, the first time since our son! I had had early scans due to MC and everything looked fine (a few things like the couldn’t find the HB on the first scan and only make me 5.5 weeks but a week later was 7 weeks 3 days and HB could be seen, then 9 weeks they could see a bleed on scan but that resolved itself).

Then at the 12 week scan the sonographer told us there was a HB and we thought that was it, it was going to work FINALLY! She then turned the screen around and started asking us questions about screening, long story short baby has a 6.6mm NT and she thinks there may also be hydrops as there is fluid around the chest and stomach. We went from being absolutely ecstatic to crushed within about 2 minutes. We were seen by the specialist screening midwife at our hospital within 10 minutes, brilliant but also a clear sign this is so serious. She chatted through things and ultimately the prognosis is very poor and we are absolutely heartbroken! We were then referred to St Georges less than 24 hours later, again brilliant but also made us realise how serious this is! The fetal medicine specialists make the NT 5.9mm and mentioned generalised skin odema, again, very poor prognosis. We had a CVS (absolutely horrific) and are now awaiting the results!

Has anyone been on a journey similar to this that wouldn’t mind sharing? I am very aware this is likely to not end happily to us but I need to know people do get through these things and end up happy one day!

Thank you xx

Hi, didn’t want to leave you with no replies. I have a similar story but don’t yet know the outcome.
I had my first child 2 years ago and everything was straight forward. Since then I had a year without being able to conceive and then 2 miscarriages. I’m currently 19 weeks pregnant and we’re told at our 12 week scan that there was fluid round the lungs and a high NT of 6mm. We too had the CVS which came back clear for the main trisomy’s but we’re still waiting for the other results. Have you had any results back yet?
A high NT can also indicate heart problems and in our case we’ve been told after a fetal heart scan that there are heart defects and we’re awaiting further scans to see how serious they are.
Have you had a scan at a fetal medicine unit? The consultant there told us the fluid could settle down and be nothing. Unfortunately that wasn’t the case for us but I really hope that it is for you and you get better news going forward.

Hi. I am in a similar situation at the minute. At my 12 week scan midwife noticed a raised nt and a little fluid on the tummy. We had to go to a different hospital the following morning and they confirmed nt of 4.8 and fluid down the baby’s back and on the tummy. I went back 5 days later to have CVS and when the scanned again the nt had increased to 6.7 and the fluid had also increased and is now on the baby’s lungs too. I still had the cvs done and am waiting on the results but I feel myself that the baby isn’t going to make it. I have 3 healthy children and had no problems with their pregnancies so this has been a shock to say the least. I feel in limbo not knowing what is going to happen. We won’t have any results until next week. It’s been the most horrible week of my life. I can’t eat or sleep. Only for I have my other 3 kids to look after I don’t think I would get out of bed at all.

I’ve seen every kind of outcome on here but I’ve more or less given up hope of a healthy baby now.

Hopingforbetterluck did you get your second set of results back? I got a call today and my CVS was clear for the main 3 trisomy’s as well. I was really expecting it to be positive. I am back in the hospital for a scan tomorrow

We got the second set of results six weeks after the cvs. Unfortunately for us it showed a very rare and serious chromosome problem and the heart defects were actually the least of the problems. It’s been a very difficult time for us and after many scans and meetings with doctors we decided to end the pregnancy due to the prognosis of very poor quality of life. Our much longed for and much loved little boy was born last weekend at 20 weeks. I was initially told the chance of anything showing up on the second set of rest was 2% so my story is in the minority. I don’t want to scare you with what happened to me as like I said the doctors told us the chances of anything showing up after the main three trisomy’s is rare. It turns out all our problems are very likely from either myself or my husband carrying a balanced translocation of chromosomes. The chances are your second set of cvs results will be clear and I’m praying that they are. Sending you love and strength…I’ve read a lot of positive stories from a high nuchal so don’t give up hope.

I'm going to share my story although for me it was not a happy ending but I AM proof that you can get passed it and be perfectly happy and content with your life post loss.

At the 12 week scan I had a NT measurement of 4.9mm. All other markers were normal. I had a CVS which came back to show no chromosomal defects. Sadly the 20 week scan showed my daughter had passed away 2 weeks earlier and I had to deliver her a couple days later. I had a post mortem and they had expected to find she had a heart defect but the results of the post mortem were that she had no obvious defects or abnormalities which I found very frustrating. I was very low for a few weeks after her birth although I was blessed with 2 healthy children and had never had trouble conceiving. I fell pregnant again almost exactly when she should have been born and my son had no issues and was born healthy at 35 weeks (early induction for unrelated issues). 10 years later I had another successful pregnancy and birth. I don't mean to sound flippant but life really did go on for me after the initial grieving phase. I do find myself remembering her every year on the anniversary of the horrible scan/delivery (it's weird, I don't think of her hardly at all throughout the year but guaranteed I will on that date without setting a reminder or anything, it's a subconcious thing). I have been left with dreadful pregnancy anxiety which I suppose is to be expected but I can honestly say it didn't leave me unbearably scarred or depressed after the initial grieving. Oh gosh, I don't know whether I should post this or not but I wanted to give you honesty and maybe a little or that whilst it will probably be the most horrific thing you'll ever go through, you CAN be normal and happy again afterwards xx

Thank you for sharing this. Last week was very traumatic but I still have to say that even though the circumstances and having to give birth was far worse in some ways than our previous losses, I’ve not suffered (yet) with the anxiety and depression I did after our second loss which was such a shock to me. I suppose with this pregnancy i never thought it was going to be ok due to our previous miscarriages. With our diagnosis it looks like every pregnancy will be Russian roulette as to whether we can gave a healthy baby but our 2 year old son shows us that it is possible. We are very lucky to have him and I still hold out hope that we will be lucky again and be able to give him a sibling. As you say in your post life does go on, at the moment I have good days and bad days but the bad days are when I watch my son playing by himself and feel desperately sad that I can’t give him a brother or sister. I know that I will try again and again as long as we are able (I’m 37) to give him that but if it turns out it’s impossible we will be ok because we have to be and we him to focus on.

Thank you both for sharing. I’m so sorry for both your losses. I don’t know what to think now. If it was positive for one of the 3 main problems at least we would have an explanation. From what I gather regardless if there is a chromosome abnormality the Hydrops are the main problem. All we can do is see how the baby is at the scan tomorrow and take it from there. I will be 14 weeks and am starting to show already. I can’t imagine carrying this baby for months or until birth knowing it’s not going to make it. That scares me more than anything else. Good or bad hearing other peoples stories helps so thank you both again for sharing x

Just an update in case anyone searches this subject in the future. There was a problem with the microarray cvs results so we will have to wait another 2 weeks for the results. I was scanned again at 16 weeks and the heart is still beating but the Hydrops are worsening all the time. The doctor couldn’t get an in-depth look at the heart because of the amount of fluid and the fact it is still so small so we are still in limbo waiting to see what happens. At my scan the previous week it was apparent the femur is very small as well but it is growing

I just thought I would update the thread for those in a similar position! I spent countless hours looking for experiences whilst we were in the midst of it all!

After the most stressful pregnancy, I gave birth to a healthy baby girl at 39 weeks. We were monitored by specialists right up until 36 weeks and no cause for the hydrops or increased NT could be found, our CVS results were clear and by 21 weeks, the raised NT and hydrops had resolved!

After being told we only had a 5% chance of getting her here, we know she is a little phenomenon and miracle!

I hope this success story helps those trawling through threads hour after hour; it’s torture!

xxx

I know this post is old but I'm going through the exact same thing, my 12 scan my NT measurement was 13.6 so extremely high, on my sheet it said the baby appears hydropic and the heart has a small leaky valve but she said the valve does usually correct itself. my CVS tests have come back clear and the nurse on the phone said that's really reassuring and asked if I wanted to know what the sex is. I declined but I thought it was possibly going in the right direction as why would they want to tell you the sex otherwise?

I have another scan on Friday so hoping the fluid has gone down by then 😢

I have no idea to think of feel at the moment as there still could be a massive chance there being something wrong with the heart.

Did they say why this happened at all?

So sorry you’re going through this. I know just how torturous it is with so many unknowns!

That is really positive that your CVS has come back clear! They didn’t ask if I wanted to know the sex, I asked them! But I suppose they can tell you with certainty as they know the chromosomes so have just offered because they can.

I was in the exact same situation, we had an early anomaly scan at 16 and 18 weeks where they couldn’t see any issues with the heart or structural defects but wouldn’t completely rule it out until the baby was much bigger so they could make sure! We didn’t get discharged from fetal cardiology until 36 weeks and we had about 4 heart scans lasting an hour or so each time! The most nerve wracking times!!

We never found out the cause of the raised NT or hydrops but we know we are extremely lucky to have our daughter after the statistics we were given!!

I am thinking of you and sending all the positive thoughts and prayers!! Xxx

Thank you so much for commenting back - I hope my situation is the same as yours 💕