Hydrops

hi, I've just posted this under another relavent thread but also wanted to create a new topic. I had my 12 week scan on Monday, picked it up from the imaging centre to take to the midwife the next day so no-one explained anything to me, figured out how bad it was myself.....
Nuchal fold was 3.6 and highly suspicious of downs. Hydrops also observed (this is a build up a fluid in two or more fetal compartments - for us around the head and abdomen) When we saw the midwife she said everything was fine, and was asking if we want to do birth classes (all the trivial stuff) etc, I explained that we were high risk for downs from the scan result and didn't know what was going to happen. If it hadn't been for me sobbing I don't think she would have done anything...She sent us to see Genetic counsellor and we waited for the combined blood test screening result. That put us at
1 in 53 risk for downs as PAPa and Hcg were low.
She scheduled me in for a CVS yesterday (yuk!) and scan again showed excessive hydrops along with cystic hydroma and all very dire. We assumed there would be downs/turners but FISH has come back clear. Now going to hosp again on Wed for BT to check for infections and listen to heart. They're not sure why the hydrops is there but it has a very high mortality rate and we're not very optimistic.
Anyone had hydrops before???

didnt want to read and run

Im so sorry you have had this news, i do have the answer to your question but what you know i wish you the very best for a different outcome when you see your health care provider

I'm not looking for false hope, I'm well aware of the high mortality rate, if you have some information or experiance I'd be interested in hearing it - good or bad.

Hi...I just wanted to wish you well, and over some support over cyberspace...

I had parvovirus early in this pregnancy (at around conception) and we were worried about the high risk of fetal hydrops for bub. I looked into it all then, and remember feeling very grim about the prospect should the baby deveop the condition (we seem to be in the clear so far). I'm not an expert, but outcome does seem somewhat dependent on the cause, and you guys have at least had some causes ruled out with the FISH. In some cases, bub can be treated with regular transfusions...I hope your doctor is able to offer some hope (realistic and not false)...

I am so sorry for your diagnosis of fetal hydrops and hygroma.

One of my good friends had a baby with this and she was delivered stillborn at 20 weeks.

Her entire journey was documented and can be found here:

Hope Sutton | Facebook

Unfortunately, when the combination of hydrops and hygroma is found this diagnosis isn't good - and that coupled with finding it early doesn't make it better (apparently the earlier it appears the more severe it is)

HOWEVER - Here is another site I'd like you to look at - it offers hope because some of these babies DO survive.

Hydrops Fetalis Community AND Benotafraid.net an outreach to parents with a poor prenatal diagnosis

Medical science knows so little as to why this happens - and the advice is often given to abort - but who knows how many of those bubs would have survived.

In my friends case, she developed Mirror Syndrome and almost died in her attempts to bring her baby to a safe gestation. But as mummas, you do what you need to for your children.

Good luck sweetheart - I hope I am soon reading about your miracle baby xxx

Hi,

I have had experience with this. Unfortunately not with a good outcome. At the 12 week scan the nuchal measurement was 10mm which obviously was extremely bad. A CVS revealed no chromosomal abnormalities. There was a cystic hygroma on the back of the neck which was still there at the 19 week scan. At 19 weeks there was evidence of fluid in one lung but no other hydrops. There was no hydrops at the next scan at 25 weeks. However by 28 weeks severe hydrops had developed and the only option was to deliver early at 29 weeks. Unfortunately she survived only 3 hours as the hydrops had severely restricted lung development and no amount of medical support could get her lungs to inflate.

The problem with hydrops is it usually just keeps getting worse. In your case with it being detected at such an early stage the prognosis is probably not good. Sorry to tell you that.

Thankyou for your responses, in light of all the information we had gathered and the diagnosis from the Dr's we decided we would terminate. But....
Today we had followup with perinatal obs she did another scan and it has shown dramatically reduced hydrops, only fluid at nucchal fold now, cystic hygroma also reduced..... we talked a lot and did more tests but for the moment we have done a backflip on our decision and are waiting for scan at 16wks to see what's happening and test results for any info on the causes. Not all clear by any means but glimmers of hope at the least now.....:pray:

sending you much hope for your 16 week scan

It seems we do have a miracle baby, scan today all completely normal. Hydrops and cystic hygroma do not exist, heart looks good at this stage. A complete reversal of the prognosis. Now we are only a marginal risk for problems in baby given the history. CVS and Blood tests for infection all normal too. Will still be closely monitored, next scan in 4 weeks @19.5 wks to check heart again.

The Dr's think it's fairly incredible!!! Theory is it may have been a small blockage in the lymphatics that caused it but it's now resolved on it's own.
So now we can annouce it to the world, we're having a baby, due date 28/8/10 :)

wonderful news i am so happy for you and your family.

Please join us in the belly buddies group as we are due around the same time, i wish you all the very best

https://www.bellybelly.com.au/forums...10-4-a-14.html