Has anyone heard of hydrops?

[benzocat]

Hello, I am new to mumsnet so please bear with me while I learn how it all works. I have a daughter who is 18 months old and has Hydrops Fetalis. Usually the condition is diagnosed during pregnancy and the outlook is not good. I think that there is about a 25% chance of survival. So far all the information I can find talks about pregnancy and what happens at birth and possible causes. When my daughter was born it was a complete shock and took everyone by surprise. She was in special care for about 6 weeks. She had numerous problems but seems to have recovered from most of them, for example hole in the heart, enlarged spleen and kidneys and so much fluid around her body that none of her organs worked properly. I would like to know if anyone has a child with this condition or knows anyone who has as I do not know what to expect in the future (I know that all children are different). I am having trouble finding information on the ongoing effects. My dd has high frequency hearing loss and needs a hearing aid and has problems with mobility. Sorry for ranting but I just thought I'd write a little and take it from there.

Hello benzocat, nice to meet you. I don't have any experience of this other than knowing how rare it is in children, but I just wanted to say hello and welcome . This will at least bump your message up in case anyone has anything concrete to tell you. Do you have good medical support, or are you pretty much on your own? There is a Special Needs section with fantastic mothers on it who will be able to give you lots of advice, I'm sure.

thanks a million tamum. Things are fine, she is a lovely girl with the nicest temperment ever. We see a hearing specialist and a pediatrician. She is having a hearing aid fitted after Easter. We have recently moved house so her care will all change to a local health authority. The health visitor said yesterday that we need to do that as she thinks she needs physio to help her to walk-she is a bit bendy. Handy for later life I know. My dh contacted a doctor from a website who asked us to get referred to a local specialist in St marys in Manchester which I am doing on Monday. Just wanted to know if there are any more like me out there.

I would try starting a discussion again on Special Needs in case there are any more people in the same situation, benzocat- just click on Topics at the top of the page, go to Special Needs and then paste your message back in. There are certainly several mothers of children who are needing help learning to walk, so at least that would be something! Your dd sounds really lovely, and she's clearly a real fighter.

thanks will do