Negative CVS for twin 2 but fluid has increased

[Georgii22]

Hi all,

Just looking to see has anyone been through this. I'm 16 wks pregnant with twins, its my first pregnancy. I was told at my 12 week scan that something doesn't look right with twin 2 and there was extra fluid at neck. Consultant said it might be patau, edwards or downsyndrome. They recommend a CVS test and so I went for that. Literally just got final results on Monday this week and all results are clear which we were obviously delighted about.

They brought me in for a scan today, I'm now 16.5 weeks pregnant and unfortunately we were told the fluid has increased- its around the neck and lungs. They don't know why or what is going on. Consultant said it could be many different things. He said twin 2 is really struggling, there may not be a heartbeat next time I go in for my scan. I'm just really overwhelmed and confused by all of this. The news is all so negative. Twin 1 is doing great and I'm really thankful for this. There is just so much uncertainty with twin 2. I asked was there a chance fluid will reduce and he said unlikely.

Has anyone been through anything similar? I just don't know how to cope. I always thought this would be such a joyful time but it's not and there's no potential end to this worry, sadness or uncertainty. Any advice would be much appreciated.

I am sorry you are going through this, when will your next scan be? I don't have any experience of this same situation, so not much help but wishing you all the best and I hope you get some better news at your next scan x

Thanks so much for your kind message. My next scan is at 20 weeks. Trying to be hopeful and strong for both babies. Just so unsettling to be told there may not be a heartbeat at the next scan... Will see how it goes. Its hard to even try find information online when I don't know what exactly I'm dealing with. X

Have hey referred you to a fetal medicine consultant? If financially and option you could cook a private scan for, say, 18 weeks so you can check how baby's heartbeat is doing

God so many typos!

@wingingit33 the consultant we have been dealing with specialises in fetal medicine so its his area of expertise. I find he is very much about preparing us for worst case scenario which is why I'm eager to gear if anyone else has experienced similar. It seems to be a rare situation to have fluid increase and cvs test all clear. I am thinking I may try get an earlier scan because 4 weeks is too long a wait for reassurance of heartbeat.

Hi @Georgii22 have you had your 20 week scan yet? How did it go? No problem if you don't want to reply. I just wanted to say I have been thinking of you, I hope you are okay.

Hey! Just want to share a positive update. I went in for my 20week scan last Thursday and they discovered a substantial hole in twin 2 heart which they believe was causing the fluid. The fluid has reduced too. Hole in heart is scary to hear but the good news is its operable and he will survivethe pregnancy. Baby will need an operation when born but then can go on to live a healthy normal life. This is really positive news. We're meeting cardiologist this week to get more information and a plan of how to deal with this. Thanks for all of your support!

That is really good news. I know it is scary that the baby has a hole in the heart but it is good that now care for the birth and for the baby after can be planned. Wishing you all the best and I hope you can start to enjoy your pregnancy again.