Fluid Under Babies Skin

[barefootcook]

Just had an email from a close friend. She is 49 and is 15 weeks pregnant with her second child using a donor egg. All was going well until a scan last week when she discovered that there was a lot of fluid under the foetus's skin. She is now waiting for more tests to confirm what the problem is. She mentioned that it was a genetic issue but very surprising given the fact that the egg is donated. Poor thing is in a terrible state wondering what it could be. Has anyone been in a similar situation? I

Hi barefootcook. I can't give much advice, expect to say that in my second pregnancy the baby had hydrops shown on the 12 week scan and I'm afraid the prognosis is not very good, particularly if severe. It is usually indicative of a serious underlying condition, such as heart or lung problems, or as you say a genetic problem. Very rarely, it can be due to a blood type incompatibility, but this is extremely rare. I hope things improve for your friend. It's very good of you to seek advice for her, you are just the sort of friend she will need if things don't work out. Sending lots of luck xx

Thanks for replying Gary. Hopefully she will know one way or the other very soon. Was there anything helpful that was said to you when your baby was diagnosed? She is very upset at the moment and I don't want to make it worse.

Noting particularly helpful, as honestly there was nothing anyone could say. But what was very unhelpful was when people failed to understand the gravity of the situation and said things like 'aww, it'll probably be ok'. Which it most certainly wasn't going to be, so I found that very irritating, and it meant they hadn't listened properly too. I know they were only trying to keep my chin up, but it did hurt. The worst thing people did was not ask because they just didn't know what to say. I fully understand that feeling, but those who just addressed it and asked if there was anything they could do to help were the people who got it right. But everyone is different and it might not be what your friend wants, it's just what we needed. And like everything like this, people (quite fairly) forget very quickly and think you are ok if you seem ok. She probably won't be for a long time, so keep asking and showing you care, it'll mean the world to her I'm sure. Good luck xx

Yeah 'it'll probably be OK' and 'if it's bad news then maybe you just weren't meant to have THIS baby' are the worst. (I'm guessing you're not one of those types anyway)

I have no experience of hydrops but I do have experience of bad news and waiting for results.

Maybe tell her about arc if she doesn't already know, they're a wonderful charity. Listen to her, I needed to go over and over all the possibilities and consequences, I needed to talk about what was best for my baby even though I knew that was a termination. These are difficult things to talk about and hear. If you are strong enough and she wants to talk then listen, ask questions so you understand, try not to advise and say 'if it were me I would...' even those agreeing with me and saying they'd do the same in my position didn't help, it just made me angrier that it was ME having to make the choice.

💐 For you and your friend. I really hope it turns out ok, however, like Gary said, hydrops are pretty serious indicators of other issues.

Thank you both for replying. She is still waiting for another test. The first one wasn't performed correctly. It seems to be taking a long time to get a definitive answer. Would you mind telling me how long it took for you to get a diagnosis? I chose to have an amnio ( due to age) a few years ago and I needed to wait a couple of weeks for the result. I would have thought in this situation that results would have come through more quickly. From what you have said it is not looking good though....

I had a minor soft marker picked up at anomoly scan. Detailed scan and amnio at Kings the next day where they found more soft markers. That's when I knew it was either T13 or T18.

We got rapid results in 48 hours but ended up waiting 4 days as positives need double checking by the lab and that fell over a wknd. However, as far as I know rapid results are only available for the three major trisomies.

We waited 6 weeks for the full karyotype (in the mean time I had a tfmr) which told us it was full T18, not a translocation and not anything additional that was genetic.

Thank you Gary and Kitty for your information and sound advice. Sadly my friend saw the specialist yesterday and there was no heart beat present. This is obviously heart breaking news for her but at least she does not need to make any difficult decisions. She is having a D and C tomorrow. I haven't spoken to her in any depth yet but will keep up regular contact as long as she needs it. Thanks again for all your help.

Very sad news but, like you say, the decision was taken out of her hands.

I remember going for my termination appointment and desperately hoping that dd2 had died already so I didn't have to be the one to make the choice.

💐 To you and your friend

Really sorry to hear that and agree with Kitty that not having to make that decision is a (small) blessing.

I would anticipate tomorrow will be very shocking for her. Although the day itself was awful, it did not compare to the grief I felt in the few days afterwards. It's great she will have a friend like you to lean on. Do encourage her to talk to ARC, they were unexpectedly brilliant for me (really couldn't see how they could help, but they did). And of course, she might find some comfort here too when she's ready.