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Hydrops Fetalis Did your baby have ascites (fluid in the stomach) as wel...

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Did your baby have ascites (fluid in the stomach) as well?

[i:7303f84e70]This message was automatically imported from the original Patient Experience[/i:7303f84e70]

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  • Guest
    Guest

    Posted

    Hi

    I had a baby born with fetal hydrops i was diagnosed at 33 weeks after begging my midwife for a scan because i really didnt feel very well.

    My son was born in may 2005 he has fluid everywhere his stomach, abdomen, head, chest his chances of survival were 20%. We were devastated but decided we had come this far why not give him a chance.

    The doctors fought for weeks to drain the fluid and finally they experimented with a drug not used on a baby before.

    After the weeks went by my boy finally came off the ventilator onto oxygen and came home on oxygen.

    He was later diagnosed as being immune deficient but we are on top of that now.

    He has also been off his oxygen for about six months and he has celebrated his third christmas.

    He has also just joined the nursery down the road and is becoming a real little terror.

    My thoughts are with anyone who has had this happen to them it is a soul destroying desease and we need to make more and more people aware of it. If someone is struggling with the decision of what to do I would say listen to the doctors but most of all listen to what your heart is telling you and weigh up what is best for you.

    I decided to carry on because my pregnancy was nearly over anyway and I left it in natures hands.

    I hope someone will contact me because I still have the thoughts of what does the future hold. And talking to people with the same experiences helps.

    • amino58486
      amino58486 Guest

      Posted

      Hi there, could anyone help plz? My son was born with hydrops and had fluid around his lungs and abdomen, the fluid in the lungs has resolved but the one in the abdomen is still the big issue. The doctors do not know how to treat it and keep telling us that he will not make it.  Please help if anyone has experienced this. 
    • letaylor9
      letaylor9 amino58486

      Posted

      Hi,

      Our baby was diagnosed with non-immune hydrops; due to fluid in chest and abdomen cavities. However, we had a thoracentesis twice to remove the fluid out of the chest cavity (heart and lungs) and it has not returned. There is still fluid in our baby's abdomen but our Dr. (we are at one of the best hospitals in N.America) has told us not to worry because the fluid in the abdomen cavity will take some time to reabsorb and worst case scenario, we could still deliver with fluid in the abdomen as it's not a health concern. I know each case is different, but I just found it so difficult going through our specific event by ourselves and not having a lot of information out there, and I think there are a lot of different views depending on your dr. I hope that your baby recovers, and you can find hope. We have been told to carry on with our pregnancy now as if it was "normal" - something we never thought we would hear after hydrops was diagnosed.

    • safiasami
      safiasami Guest

      Posted

      Dear I am facing the same problem, my baby is at 24 weeks and moderate ascites in baby's abdomen.. doctor advice to abort at this stage. Doctor just say that there are possibilities of future abnormalities but as per ultrasound all baby organs are normal. please suggest that how this abnormal fluid can be excreted. Your valuable response will be highly appreciable.

      Thanks in advance

    • michelle51295
      michelle51295 safiasami

      Posted

      My daughter is going to be delivering her twins next Wednesday (Feb 11th). She is having a boy and a girl. The little boy has ascites that hasn't developed into hydrops and there has been no diagnosis as to why he has the accumulated fluid in his abdomen. She will be 34 weeks tomorrow and 35 weeks when they deliver. They wanted to deliver next week because the fluid appears to have gotten worse since last week. We were told they could drain the fluid once he is born.

      I will keep you posted safiasami and they told us it was better to abort also when she was 28 weeks.

    • melanie6276
      melanie6276 michelle51295

      Posted

      Hi Michelle,

      I am in the same situation your daughter was in, I was wondering how everything turned out? If everything came out fine.

      Thank you!

      Melanie Sparks

    • michelle51295
      michelle51295 melanie6276

      Posted

      Everything turned out fine!! There was no evidence of ascites when he was born. He stayed in NICU for 3 weeks just for feeding and he had a few bradys. It was so strange to see all the ultrasounds with fluid in the abdomen and then when he came out nothing was there!
    • linda52457
      linda52457 amino58486

      Posted

      Hi I was just reading your story and was wondering how things went??? My daughter is 21weeks ans just diagnosed with the fluid in the babies stomach..they spoke to her about termanatiom before the 24 week mark..im so scared and heartbroken
    • linda52457
      linda52457 letaylor9

      Posted

      My daughter just got diagnosed with this at her ultra sound yesterday.she is 21weeks. We are scared to death..what hospital did you go to amd how did everything turn out..
    • amino58486
      amino58486 linda52457

      Posted

      Hi Linda, sadly my boy passed way after staying 4 weeks in NICU. They diagnosed him with Hydrops when I was 25 weeks pregnant and the fluid just got worse as weeks past by, I was diagnosed with pre-claimsia and they had to deliver him at 32 weeks. Doctors have tried everything to get the fluid off his abdominal but did not succeed as the fluid re-acumulated He went through a lot but is a better place now. I wish your daughter all the best. My prayers are with you guys
    • mccratch
      mccratch letaylor9

      Posted

      What hospital were you at? Our dr. Basically gave us no information and I am researching myself.
  • Guest
    Guest

    Posted

    my baby had non immune hydrops. She had fluid in her lungs, stomach and skin. Her prognosis was very bad...nobody expected her to live. One of her lungs was drained in utero so that she had a chance of surviving birth. We were told she would be at least 2 months in NICU on a respirator. After one week she came of the respirator and at two and a half weeks graduated from the NICU to the Special Care Unit. At 6 weeks (one day after her actual due date) she came home. She is 7 1/2 months old and a picure of health. She beat the odds and amazed the medical staff. We are very blessed.
  • Guest
    Guest

    Posted

    Hi all, my baby currently has ascites. Her whole abdomen is full of fluid. They first discovered the fluid at 22 weeks when i had a routine scan. There wasnt much fluid there at the time so just suggested i come back in 4 weeks for another scan. I didnt make it to the 26 week scan as at 24 weeks i became really poorly. I had symptoms of pre eclampsia and when they scanned me to see how the baby was they discovered that her whole body was full of fluid. At the time they gave her a 3% chance of survival as they thought i'd have to deliver her then due to the pre eclampsia. Fortunately we stuck it out and had tests and they seem to think i've had parvovirus which has caused the fluid. I am now 30 weeks and having scans every week to check how she is doing. She is growing fine and the consultant said that some of the fluid had gone so fingers crossed everything will be ok. I no longer have signs of pre eclampsia and they think it was just a side effect from the virus. Has anyone else been in this situation? Michelle x
  • Desiree609
    Desiree609

    Posted

    I am 21 weeks pregnant with my second boy. During my 20 week routine scan the doctor said it 'appears' there is fluid around the heart and it 'appears' there is fluid in the tissues of his abs. The only outcome of this would be hydrops. I am going to be sent to a larger hospital to have a second ultrasound and I just hope what she is seeing is not really there. I've never been so scared in my life.
  • Guest
    Guest

    Posted

    Desiree.I hope everything goes well for you,if there is a problem then they have found it early,it was too late for my little girl,I was nearly full term when we lost her,melissa was stillborn,your baby has a good chance,I know its a very scary time for you,you will be in my thoughts,good luck,stay well...linda
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