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Large Cystic Hygroma & Fetal Hydrops

(10 Posts)
KleineMeisje Thu 19-Nov-15 13:19:04

I'm feeling pretty awful. I'm 13+2 today. I went for my 12wk scan last week and got the devastating news that baby had a large Cystic Hygroma (from back of neck down to its bottom) and Hydrops on it's abdomen. I was sent straight from my scan to Fetal Medicine. I met a consultant who confirmed the scan details. I had a CVS, which after 2 insertions didn't work so had an early amnio; awful procedures. I did those in order to get a full idea of what I was faced with. I've since had some early results showing negative results for 13, 18 & 21 and no sex chromosome abnormalities. Consultant is now running full aCGH test on all chromosomes. There's still a chance that those initial results will come back positive. I'm in complete pregnancy limbo. I know there are some lovely miraculous stories out there and some equally disheartening sad ones. I'm 41, so I was prepared for challenges. But this didn't even pop up as something I should've thought about. I guess I'm scared and feeling useless. I have no idea why I'm posting; I think I just wanted to 'emotionally dump' somewhere.

nannyplumislostinspace Thu 19-Nov-15 14:07:03

So sorry for what you are going through. one of my twins had a 6mm cystic hygroma ( they were identical so even though only one had the hygroma, both would have been affected by any genetic issues)and although the cvs came back clear we lost both late on in pregnancy. In my case we found out it was due to twin to twin transfusion, however the consultant told us that a hygroma that size nearly always indicates a structural or genetic condition and unfortunately the outcome is even worse when hydrops are present.

Can you get in touch with ARC? They are an excellent charity and could provide you with some advice.

KleineMeisje Thu 19-Nov-15 16:40:00

Thank you for your reply. Sorry for your loss. I know the outlook isn't good for the combination of CH and hydrops. I think I'm just clinging to any good news when it comes. I've looked at the ARC website and taken down the number. I'll give them a call on my lunch tomorrow. Thank you.

timelytess Thu 19-Nov-15 16:43:22


offbeatgirl Fri 20-Nov-15 15:29:46

OP, I'm sorry you're in this situation. I went to the 12 week scan for my first pregnancy having thought about what I'd do if the baby had down's syndrome, and hadn't given a thought to the other problems that could occur. Like you, I then discovered that the baby had a large cystic hygroma and fetal hydrops. In my case, a CVS ultimately revealed that the symptoms were caused by Turners Syndrome, and they got progressively worse over the next four weeks. I ended the pregnancy when it became clear that my baby wouldn't survive. But as you're aware these symptoms could be caused by a number of things, which affects the prognosis. There's even some lovely stories of babies with Turners Syndrome where the symptoms start to diminish and the babies survived to term. Perhaps the only constructive thing I can add is that while it was a horrible few weeks, I've never regretted waiting until I had a clear prognosis before making a decision about what to do with the pregnancy. flowers

KleineMeisje Fri 20-Nov-15 18:24:42

Thank you so much for your reply, I'm sorry for your loss. I had read some older threads of yours and others which have helped me feel that if others can cope, so can I. I'm glad had the early amnio; it will give me a clear idea of what I'm faced with. The rapid results seem positive but I know its not that simple. Until the full array comes back I guess I just carry on talking to baby and playing my favourite songs to my belly. And thank you to the other lady for the flowers. Sorry, new at this.

Ellieboolou27 Wed 30-Dec-15 21:22:58

Hello, I was looking around this topic as my brothers gf is 21weeks and was told baby has fatal heart condition and they are deciding if they should continue, then I read your post about hydrops and I felt I had to reply. I have been through this myself. I'm not sure about the other condition but at my 20 week scan (this was back in 2005, my first pregnancy after 4 years trying at aged 35) I was told my son had fetal hydrops, I had an amnio (it's not nice but not unbearable either) I had further scans at UCH hospital and was told that I could either continue with pregnancy with only a 10% chance of survival and have serious health conditions or terminate, it's a terrible and dark place to be, I chose to terminate and had to give birth as I was too far gone for a d&c, I really feel for you as it's like a light has gone out, however, take all the tests that are offered, talk and ask as many questions to the consultants. I used to read the threads from arc and sands but never posted, it was just comforting to know I was not alone (although I felt it). I'm so sorry that you are going through this, i know how awful it is.

KleineMeisje Sat 02-Jan-16 17:42:15

Sorry for the late reply. Awful time of year. I had a tfmr on the 18th December at 17 weeks. All the chromosome tests came back normal but the scan at 16weeks showed baby was beginning to show worrying delays in growth and development of organs. Consultant told me that baby would probably not live for much longer. Tfmr was a really hard decision. No real cause has been found for the severity of the hydrops. I'm waiting for post mortem results. Thank you for taking the time to reply to my post. I'm sorry you had to go through this too. It's almost unbearable. I haven't had any peace to process what has happened. I'm hoping that now Xmas/ny is over I can grieve in peace.

Ellieboolou27 Sat 02-Jan-16 18:10:22

I'm sorry to hear that u had to go through that, it takes time to come to peace with things, (much longer than others allow for I found). I became quite bitter about pregnant women! It's all normal feelings, be gentle on yourself, talk it through as many times as u need to. I wish you all the luck in the world that u go on to have a baby, it will be a difficult time for u but I promise u will find peace xx

KleineMeisje Sat 02-Jan-16 18:24:27

Thank you x

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