yesterday we had the new ultrasound. The fluid has increased. Now it is slowly coming to the arms, too. the skin is now about 1 cm and there is a lot in the chest. Still there is a regular and normal heartbeat.
All tests had been negative yet.
No one seems to know how to help. They told us about the shunts but wouldn't do that in our situation.
We can wait what might happen. Maybe the fluid goes away by itself, but that is more hope than reality. Maybe the baby will die because the fluid will stop the heartbeat when it becomes too much. Maybe he will bring it to birth but what will happen then? Will he be able to breath? Will he have edema all his live? Or will he die then?
Again they told us to terminate the pregnancy is possible at this time, too. Later it will be possible, too, but more difficult. The decision must pass an ethic-commitee then (what I think is a good thing, it shouldn't be to easy to terminate a pregnancy).
But this is not the time to give up now! I still cannot believe that my baby shall die because of some f*** edema while you can heal heavy heartdiseases, transplant hearts, livers and kidneys and you can even clone sheep! This is not getting in my head! We will now search for opinions and possibilities, no decision in this case is easy and whatever we will do, we will think about it a lot and handle with care.
Whishing the best to everyone!

hallo again!

We have contacted another doctor who was not such negative, she gave us the advice to contact two other doctors who are specialists and who have experiences with the hydrops. So we sent an email with the pictures and the letter from the prenatal center to them, too. One gave us answer yesterday - he wrote back, that it would be necessary to drain the thorax - as soon as possible. We will call him on monday! I hope there will be time for us next week, and I really, really hope it is not to late. I feel, we do not have much time, if we want to save our baby. But now I know there is a chance and that makes me stronger! I was really angry that they didn't told us earlier that there is a specialistic team for fetal surgery, we had to find out on our own, so we lost time, that maybe was important for our baby.

whishing everyone the best, stay strong!

Best of luck - I hope they can treat your baby and with success. It is encouraging that they can find no major organ problems or chromosomal disorders. I have read some stories of hydrops reversing in babies and no one knows why it came in first place or why it went away. Will be thinking of you & ur little boy xxx

I understand how you feel. All the confusion and fear. Don't give up. Things really can turn around. Babies can be so strong even though they seem so tiny and fagile. Our Zoey fought for 19 days after she was born, and I cherish every second I got to spend with her. I hope your wee one is one of those beautiful miracles that makes it through this. If things remain bad, just know he feels your love for him and be proud of how long he fights. Much love and hugs to you.

Thank you for your replies! We keep on fighting.
Last week we went to the specialists. We arrived on tuesday, they did the ultrasound and it looked worse, the fluid put pressure on the heart, whole skin was with edema, even the placenta has grown too big.
They decided to put the shunts in the evening and so they did. The little one has now a little shunt on both sides of his thorax, they immediatley started to work.
I stayed in hospital until friday. everyday they made an ultrasound. The fluid in the thorax is nearly away on one side, and less on the other, the heart can work again. the edema in the skin need more time, but it seems to me, that they were a little better, too. Now we have to wait if the pressure from the fluid hasn't done too much damage to the blood-circle-system. I will have to go to weekly scans. If anything is getting worse or the shunts doesn't work anymore, I will have to go back to the hospital next day.
I know still the baby is not saved for ever, but in that moment it was nearly to late. I am so glad that we went there, otherwise the baby might have died within the next days.
It is a great team there, I think every wonder is possible there.

Now there is hope again! i know it is still a long time to birth, I am in week 21 now, so a lot can happen, but we will fight to survive! And we know there is a chance!

Wishing the best to all of you!

Hi there, oh gosh, I've heard so many stories that the hydrops just miraculously disappeared! And I feel like it's easier to cure hydrous if there are no chromosomal defects or organ defects so in a way you're still blessed. I'll pray for your baby. I know he's got your fighting spirit and I really believe that as ling as parents believe and stay strong, it makes the baby feel and do the same thing. We are practically on the same boat and not only am I praying for my baby but for yours too.

Please update us too. Looking forward to hearing from you :)

Thank you Kimy0907! I'm thinking of you, too. i hope your as fine as possible in this situation!
We went to a check up today. It seems to me, it is getting better. Still there is fluid, but it is less, the heart can work and the lungs can develope. next check up on monday.
What makes me wonder is that now, i am getting edema. Within a few days my legs were very swollen, and in the morning my face is swollen, too. Well, I hope this will not getting worse!

wishing the best to all of you!

It is very sad. i have to tell you, that we have lost the fight. I had to give birth yesterday morning. Whole night I was in labour pains, but there was no chance to stop it. Our son was 25cm, 575g, 21 week. He didn't survive the birth. it is very, very sad, but all team of the hospital was very kind and we could say "goodbye" to the little one.

For all who are still fighting: don't give up! I hope for you things will turn into good!

So sorry that we have another angel lost to hydrops. Its 3 weeks today that i lost my son, he was 24 weeks and 2 days.
The only comfort you can take is that you fought hard for your baby and got to say goodbye, Treasure that.

As for coming to terms with your loss it will take time, the only way i can get through is by keeping busy so that i do not have time to think and searching for anything positive that may come as a result of all this pain.
xxx

I am so sorry for your loss. We want to thank you for your support. I hope the best for you and your family through this difficult time in your lives.

I am so sorry for your loss. I know how hard it is and how hard it will be. Please be gentle with yourself and take the time you need to grieve. Know that you did all you could to save your baby. I will keep you in my thoughts.

I thank you all for your support!
We will bury our little Leo on friday. Maybe it's getting better when we have layed him to rest.
It is so sad to give birth after just the half of pregnancy and without having a child to care for then. Sometimes I feel kind of cheated. But who do I tell, you all know what it is like.

wishing the best to all of you! And those who are still fighting: it's time for a new success-story! Do not give up!

i am 20 weeks i have severe generalised hydrops going to the hospital to day to find out im scared dont know what to do can not stop cry NEED HELP! my doctor was very rude she said theres no point trying she gonna die but every think is normal my amniotic fluid is normal my abdominal wall is normal the babys gestational age is 14 weeks 5 days dont know what to do im so sad its my 1st baby ad im only 19 i dont think i can take the pain but i want to keep her and fight until there nothing left to do but need help ad infomation!

Hey leah,
I wish you the best! Don't let others decide about you, it is you and your baby. Do only what feels right for you! I wish things will turn better for you!
I've sent you a mail.