Fetal Hydrops

[brone]

My wife and I presently have a 5 year old son who's healthy.  2 years ago we delivered a stillborn baby boy at 29 weeks.  He had severe hydrops.  All tests came back negative for viruses and chromosomes.  The autopsy indicated the baby had severe erythroblastosis an enlarged spleen and edema throughout his entire body.Therefore, we found no cause for his death.  We were told it was a freak thing and that 50% of the time they can't find a cause for hydrops. So, here we are 2 years later and my wife is 26 weeks pregnant w/a severely hydropic baby that'll most likely die as well. Again, we have no answers.  At 16 weeks our baby boy started to show fluid, but just in his belly (ascites)by 19 weeks the fluid progressed into hydrops.  We went to Detroit at 19 weeks gestation and Dr. Mari (excellent doctor)gave a complete ultrasound hoping to find signs of anemia (which our last baby wasn't). After the ultrasound he indicated that he didn't think the baby was anemic which wasn't good for us, b/c his only chance to live would be if he was anemic and they could do blood transfusions.  Anyway, to be sure, Dr. Mari did a cordocentesis (Sp?)and the baby wasn't anemic and still is showing no signs in ultrasounds. Finally a genetic Doctor spoke w/us and told us that most likely the hydrops is caused by a genetic defect in the baby.She had the baby's blood tested for enzyme deficiencies and again tested for chromosome abnormalities and viruses. All tests were neg.We are now waiting for the Pyruvate Kinase def. test hoping it's pos. PLEASE HELP us if you know of anything else we can do.Mat

[mommie2]

I wish I could help but I wanted to say that I would be thinking of you and your wife and I hope the best for your family. Maybe some good news will come your way.

[Harley-girl]

I am so sorry that you are going through this. I am not familiar with this disease and have no advice to give. Just wanted to let you know you are in my prayers.

[monsterzero_girl]

You're in my prayers, too. Maybe a little research on the disease would help, though. Here's a link I found with some good information.



http://en.wikipedia.org/wiki/Hydrops_fetalis



Maybe you could find something out there. At least a little more knowledge on the problem...

[jgirl34]

I am also sorry for what you two are going through. You will be in my thoughts and prayers. I don't have any info to help as I have not even heard of this before, but I hope all turns out well. God bless.

[brone]

Thank you all so much for your prayers.  It looks as though it's the only thing we have left to do is pray.  We are so thankful for our one child and may never have another, so I guess our one boy is a miracle.

[Igor']

Hi Brone,

It's August 26th, any news?

[tmicpa]

I am 14 weeks pregnant and was also diagnosed with fetal hydrops.  I'm going in for another sonogram on Friday to see if it has gotten worse.  I'm scheduled for amniocentesis on 9/15 to see if related to chromosomal defect.  I'm sorry this happened so late in pregnancy for you.  I have researched fetal hydrops and cystic hygromas for countless hours and the prognosis is not good.  I have not come accross anything on what can be done. I assumed all you can do is wait and see what happens.

[F.R.O.G.]

Brone,

I am so sorry to hear of your situation. My husband and I have lost 4 boys due to hydrops and, like you, we have no idea as to why. One of our boys was anemic but was to little to do the transfusion and another one had the enlarged spleen. With all four boys we delivered anywhere from 21 to 26 weeks. Until I read your message I felt that we were the only ones going through this. I am now pregnant again (with another boy) and I am 19 weeks. So far everything is good but I am a nervous wreck. We were not trying to conceive and when we found out I was pregnant we prayed for a girl (we have 2 girls that are healthy) because the dr's think it is sex-linked genetic problem. I wish I could give you advice as to what test to ask the dr's for but we have gone through everything. I am really surprised I have any blood left. Just this pregnancy they have taken 16 tubes of blood to test for specific problems and absolutely everything is fine. We haven't gotten an amnio this time. I have refused. All the other times the chromosomes have come back normal. You and your wife will be in my prayers and I pray that you can bring your boy home. If you or your wife need someone to talk to for support I would be happy to email you. Just let me know.

In His Grace,

F.R.O.G.

[mccall]

Brone,  
  My mife and I presently have a baby at the nicu in edmonton ab.  He had severe hydrops when he was born, and although they have'nt determined the cause, another symptom in my wife was a condition called hyperplacentosis, which is also linked to hyperthyroidism.  Although these are all symptoms of something not yet know, we're trying to track things back to a potential cause.
We're lucky enough to have been sent to a very good nicu unit, which has been able to get most of the edema taken care of while supporting his vitals as well.  They chose to do a c-section birth at 28 wks. as well as steroid shots, both before and after the delivery to help his lungs develop faster.  Now it seems like a waiting game to keep him breathing while he develops enough to get off the ventilators etc.
All I can recomend is to find the best neonatal specialist you can, get them involved and perhaps they will choose to take the baby early to more effectively support the baby while he develops.  I know this can also cause dangers for mom, so make sure they are monitering her thyroid funtion as well.

[kritty911]

I am currently 22 weeks and yesterday 9/18 my baby was diagnosed with severe hydrops and cystic hygromas.  I have never heard of this before and the doctor told me basically there is no hope, most likely my baby wont make it.  I feel like I'm sinking and there's nothing I can do.  I read about your wife giving birth at 28 weeks and it gives me a little hope.  Does your baby have down syndrome?  They said mine might and they took an amniocentesis.  I dont know what to do.  But now that I read what happened to you I can ask my doctor about this, it gives me some hope to an almost hopeless situation. I have one daughter she is 7 months and completely healthy.  I thank God for her everyday, this just makes me appreciate her that much more.  I hope everything works out for the best for you and your family.  

[sac93022]

Hi,
I found a website for just hydrops babies.  I posted a story about mine,  Sophia.

http://www.hygen.net/hydrops-fetalis/index.php

please check it out.

[India6980]

Hi

I am 25 weeks pregnant with my first, much wanted child and he has also been diagnosed with hydrops including scalp edema, pleural effusions and ascites.  I was diagnosed with this at 20 weeks and was told that I would probably lose the baby.  Since then, I have been waking up every morning thinking that this might be the last day of my pregnancy. Last Sat 05/13 I went for a scan and was now told that besides the hydrops, there is barely any amniotic fluid around the baby.  Once again I was told to wait ... is there any advice anyone can give me?  I

[Steph109]

Hi,
My daughter delivered a hydrops baby in October last year, and the baby is now very fit, healthy and happy.  The specialists at NICU, Auckland Hospital, New Zealand did a magnificent job - they are probably the best in the world.  Hydrops was discovered in my daughter at around 29 weeks - the baby was 6 weeks premature and stayed in hospital for 10 weeks with specialised care. She also needed a small bowel operation.  My daughter was injected to remove fluid when the hydrops were first diagnosed and the baby was born 2 weeks later, so there is definitely hope.  There was no known cause for the Hydrops.  I hope this helps but it is really important to have the very best medical attention possible.

[Garry1974]

We lost a girl and a boy at 25 & 30 weeks due to Non-immune hydrops with no known causes. All the tests giving no indication of any causes. My boy battled for three days in Intensive care but could not survive. It has been couple of years now that we did not plan further and still longing for a child.

Now we want to plan again and looking for good hospitals that are equipped with special care and specialist doctors who have handled such cases before so as we are prepared for any similar situation, if arises again. If anyone has done research for the same in NY/NJ/PA area, any information would be helpful.