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Thread: Cystic Hygroma / Hydrops

  1. #1
    Ralph Guest

    Default Cystic Hygroma / Hydrops

    I'm sorry if this is posted in the wrong forum, but this is the closest I could find to what I needed.

    My wife is at 16 1/2 weeks and the baby has just been diagnosed with severe cystic hygroma and hydrops. We were told that there were mutiple cysts and the perinatal specialist has told us that the main one was twice the size of the baby's head. As we understand it, cystic hydroma and hyrdops are fatal.

    The perinatal specialist we saw was very uncommitted about the prospects for our baby to survive. He essentially just told us that the baby had pretty severe cystic hydroma and hydrops, but wouldn't say whether it was a good idea to continue with this pregnancy or not. We were first tipped off about the conditions by her OBGYN who called us and told us that the baby had "multiple congenital defects" and referred us to this perinatal specialist for a second opinion.

    We have scheduled to terminate the pregnancy in a couple days, but we want to be absolutely sure that this isn't the kind of thing that can heal itself in the womb. I don't want my wife to have to go through the trauma of having the baby die inside of her, but I we also don't want her to go through the trauma of terminating it with any doubts about what we did. Should an ultrasound combined with the records from the first two ultrasounds be enough to make this kind of decision, or do we need to wait this out in hopes that something might change?



    If there is a medical professional on this site who gives this kind of advice it would be greatly appreciated. Obviously you can't make a diagnosis without seeing an ultrasound and whatnot, but just a general guide as to what you've experienced in the past would be very helpful.

  2. #2

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    Default

    I am just moving this to Medical conditions during pregnancy. I hope someone can give you some advice.

  3. #3

    Default

    Jeez Ralph, I'm so sorry to hear that news, you must both be so shocked. I work in health but not specifically in mid/paeds so can't give you any inside info on the condition. I imagine that if you've seen a perinatal specialist and had the US's then they would be fairly certain about the condition and prognosis, particularly if one of the US's was done by an OB specialising in diagnosis. Have you had an amniocentesis or CVS? I understand these conditions are often associated with other major genetic conditions too, which might have something to do with the advice you've received.

    From what I can see on the reliable medical websites I visit, it looks like the combination of the two conditions means a bad outcome (pretty much certain the foetus isn't able to survive). I've read some cases where the baby has survived, but this is mostly where the hygroma is anterior and if there is only one, and with no hydrops. I have also read some stories people have written who decided to continue the pregnancy after diagnosis however the majority went on to lose their baby before birth at some point. The cases where the hygroma resorbed tended to be in anterior single simple hygromas without any other genetic problems, which sounds a bit different from the US info you have.

    Ralph, I'm not a Dr and I don't know all the info, but I am wishing you and your wife the best whatever decision you make and whatever happens. It's a tragic thing to lose a much loved child no matter when it happens. I'm thinking of you all.

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