Cystic hygroma

[Missy38]

So long story short, baby had fluid behind the neck at 12 week scan but resolved by 14 week scan, I had a 1 in 15 chance of DS i then had the nipt test it came back low risk, so I was told as we had the hygroma behind baby neck there could still be other abnormalities, the cut off for this was 3.5 and mine was measuring 3.6 not a huge amount over I know but still risks, fast forward to 24 weeks now I've had multiple scans and checks and the heart all looks good and normal and what they can see from the spine but they say suboptimal view which I'm guessing not a clear image due to my weight or position of baby?? I turned down the amniocentesis as there's no markers on scans and they say all looks normal, but the consultant said I could still have a down syndrome baby as its not 100%, I know its a 3% chance I could but its all im thinking about and really worried whether I should risk the amniocentesis now 😕 but then it's the risk of miscarriage, baby weight, head and length are all in the middle percentile, I'm just wondering if anyone has been told anything similar and gone on to have a healthy baby? I just can't relax and enjoy this pregnancy at all this time 😔

I also found out my baby has a cystic hygroma at 12 weeks. The NT measurement was 4.6 so higher than yours. I was referred to a consultant who scanned again and said that the baby has a poor prognosis, if I do not miscarry so did not look good at all. I have the next scan with the consultant next week so will know more then. It sounds like your pregnancy has gone aswell as possible since the 12 week scan which is great news but I can completely understand the feeling that you can’t relax or enjoy the pregnancy as even if we get good news next week I don’t see how I will be able to relax throughout and I am already finding that the longer it goes on for the more drained I am so you must really be feeling like that. Whilst I can’t help you in terms of the outcome I just wanted to say I know how tough it is and that I think what your feeling, although incredibly difficult, is completely normal. Just try and see the positives where you can in terms of how well everything has gone since 12 weeks. I try to just get through each day if possible but I know that is sometimes easier said than done x

I am now 16 weeks

Hi, sorry only now I'm seeing your reply 🙈, im now nearly 30 weeks and all scans look as normal as can be and the heart scans etc were all normal, im having growth scans every 2 to 4 weeks at the moment as baby was on the 10th percentile so they keeping an eye on the weight, i was discharged from fetel medicine as the NT disappeared at 14 weeks and they couldn't see any other problems, i didn't bother having the amnio at 20 weeks because I went off the heart scan and I don't think I could have terminated a 20 week pregnancy, so now 10 weeks left and what will be will be I guess? How about you, hopefully all is OK x

I'm not sure how to tag or reply to a person's name 🙈

Hi @Missy38, I’m sorry for the delay in responding. I had the next scan that I mentioned in my message above just before 17 weeks and at that scan things were looking a lot better and I was informed that I had a 50 percent chance of baby being born alive and well. I had an amnio just before 18 weeks and unfortunately following that we found out that our baby had Patau Syndrome, which came as a huge shock. I had a further scan at around 19 and a half weeks and found out that the baby’s heart had stopped beating, I was induced and had my baby at 20 weeks on 11 June. We were able to spend some time with our baby and he was tiny but beautiful. I hope that things are still going well for you and wish you and your baby all the very best. The fact that all your extra scans have been ok and that you have been discharged from fetal medicine is really good news! Although all was looking good at my scan at 18 weeks, I expect that issues would have been picked up at my 20 week scan if we had made it there (I wasn’t due to have my 20 week scan until 21 weeks) so I hope that what has happened to me and my baby does not cause you any additional worry xx

Aww no im really sorry 😞, life is so shitty and cruel sometimes, im happy you got to spend some time with your baby, i can't imagine how hard that would have been for you, I've come to terms now as I'm turning 31 weeks what will be will have to be, even though I know it sounds horrible but I keep having nightmares of baby face being deformed ☹ and me rejecting him at birth 😭 my scan thursday looked OK hes put on more weight and now at 3lbs 7 and on the 50th percentile, I have to go back in 4 weeks now, i was worried that his head and legs are over a week upfront where as 2 weeks ago they were only a day or 2 in front? But I really don't wanna go off their measurements as my last baby they said was gonna be big over 10lbs but she was 7lb 3, i don't know what to think of it at the moment but trying not to let that worry me, but anyway again, I hope your feeling a little better in yourself, I know nothing anyone can say will take away your pain but make sure you take some time for yourself xx

* a week infront * that should say

I am having good days and bad days at the moment but I am sure that is to be expected as it is still early days. I know everyone is different but please try not to worry too much about rejecting your baby. One of my fears about meeting our baby was that it would be very traumatic and a memory that we wouldn’t want to have, but even though he did not live, we felt nothing but overwhelming love for him in a way that I never imagined possible. I really hope everything works out ok for you x

Hi @Missy38 I'm in a similar position as you were with an NT OF 3.7 and cystic hygroma. I was wondering how did everything work out for you? X

Hi, just to let you know all that worry was for nothing, I ended up going over 9 days, I was so worried what the outcome would be as I didn’t have amnio, so fast forward today I have a perfect little 6 month old who’s actually trying to roll back over as I type lol, he does have a grade 1-2 heart murmur which has been checked and it’s nothing no holes no problems etc so they will check again in 6 months and discharge him, if your scans come back all good and the CH disappeared like mine did, try to relax and enjoy the pregnancy because I wish I listened to advice of others, the doctors are not always right, try and remember that, I had a 1 in 15 chance of DS, they wanted me to terminate😳 can you imagine if I did listen to them ☹️ But yeah he’s a happy very forward little chunk lol xx

Thank you so much for a prompt reply, I know it's busy with a baby! I'm so so pleased that you have had the positive outcome!

I went for a cvs yesterday, but they couldn't do it because my placenta is at the back. But the NT is still there and a bit of fluid on the neck. Consultant thinks the fluid on the neck will absorb but the NT is still there. My combined bloods came back as 1:14 chance for Down Syndrome. So I'm still high risk. I'm waiting for an amnio now. I have a feeling it will say Down Syndrome but have to wait and see. I'll update you once I know xx

How many weeks along are you now? I turned both down cvs and amnio because I didn’t wanna risk the miscarriage, I’ve read a lot of babies are still born with the nt, ask if you can have the nipt test so they can check the dna of the baby? I’m not sure where you are but in Wales it is free but quite expensive in other places, this took a massive weight off my shoulders knowing he didn’t have DS, it’s worth the ask if your placenta is in the way to rule out DS, have you had your 20 week scan yet to see if there’s anything they can see ?

Im 14+2 today. I'm in wales and the consultant told me NIPT is not available on Nhs. We decided going private for the test is not for us, we need a more definitive answer either way

My nt disappeared after the 14th week, you need to speak to your midwife as the nipt is free in Wales on the Nhs, I had mine last year, they offered it to me and I’m in Carmarthen, and I totally understand what your saying about definitive answers, keep me updated x

Actually you're probably right. I saw a consultant in Bristol who told me that so he was probably referring to England rather than Wales. I got referred to Bristol because the FMU in Newport didn't have availability to do cvs in time. I'm going to call the midwife on Monday to update her so I'll have a think about doing NIPT as well. Thank you you have given me something else to consider x I will update you and I started my own thread so will update there too