Hydrops fetalis

RE: Hydrops fetalis

aww, honey

Let me start off by saying that I have no experience with this terriblesickness or the feelings of hopelessnessand turmoil which you will likely have experienced during these extremely sad times. However, I too have lost a baby and I know how that feels and I would like to let you know that I, or any other member of hp I'm sure, would be more than willing to listen if you feel you would like to talk or get anything off your chest

I would also like to wish you a very warm welcome to healthy pages,

warmest wishes and hugs,
Linzi xox

RE: Hydrops fetalis

You poor girl. Please don't give up on life or trying for another baby. I'm sure with proper genetic counselling things will work out for you. You don't say where you are from or where you live but if you live in this country, I'm sure you and your husband can be helped by genetic couselling, and if not you must consider adoption. I had a very rare form of ovarian cancer when I was twelve and wasn't expected to survive so no one considered the impact of not having kids would hav on me. I eventually met and married a wonderful family a 14 year old girl and an 11 year old boy and their wonderful father. Don't give up. Gaby. If you are really struggling you can PM me in confidence with anything you would like to off load. Love, hugs and empathy Lynne

RE: Hydrops fetalis

Hi Gaby,

I'm so sorry to hear of your loss, and although I don't have experience of Hydrops Fetalis or losing a child but I just want to echo what everone else has said- we're all here for you, and if we can do anything to help, we'll be there:D

Welcome to Healthypages, and I wish you all the best,

Much love,

Azalia xxx [sm=hug.gif][sm=1kis.gif]

RE: Hydrops fetalis

Thank you for encouraging me but s not that easy in this stage.I hate it but I know it because I experienced it after the loss of my first baby that time is very effective in giving you hopes again and feeling less pain when you look at the pictures of your death babies.But specially after the second loss I think it is gonna take even more time to be able to" live "again.I don't want to but I guess it is part of the punishment portioned very generously for me.Genetic counseling is possible only after they have a clue,no matter how small,but we still don't have the least clue about why my babies get this sickness all the sudden at 29 weeks of gestation and then die sooner then you can prepare yourself for the loss.I know,nobody can be ever be prepared for a loss,I am silly .It was justa thought.
Now I have an other question,I did not havea period yet since I had my baby except the normal bleeding after delivery but that was a while ago,three months.I never was late with my periode.Do you think that's normal(I had an other c-section with my first one and than my cycle came back normal )or I can go into menopause at 34?That would be just great,than I really don't see why I would live an other day on this earth!Did you hear or have anything like that,missing period for a prolonged time after delivery?I never had a day late in my life,exept when I was pregnant.I can't be pregnant again,we use protection.

RE: Hydrops fetalis

I am so sorry for your losses. I do have experience with loosing a child due to Hydrops. I lost my son on June 19, 1995. He only lived a few hours. I saw him once hooked up to machines. The second time I saw him was after we took him off life support and he passed before he made it to my room. I have looked high and low for answers to this terrible disease and why it affected my son. I do know it was non-immune hydrops and I have several speculations as to what caused it but I know I will never truely know. I want to be as educated about the disease as possible. If you would like to talk sometime please let me know.
You are a strong person and I wish you the best. I cannot take the pain away and I will not try. I can however be a friend and try to help you through the hard times. Please let me know if you read this message as I would love to help you.

Judy
Parker's Mommy
June 19, 1995

RE: Hydrops fetalis

Hello gaby,

I am so so sorry for this awful time you are going through in your life, i jus t hope thigs can get a little better for you and you get some answers to give you some hope!

I am here if you every need someone to chat to, i will pray for you

RE: Hydrops fetalis

Hi
I am new to this site and am in constant search for someone who has had a baby with fetal hydrops I had my baby boy two years ago. He was diagnosed with this extremely rare condition at 33 weeks my pregnancy was fine until I started feeling very uncomfortable and felt as though I could give birth at any moment.
My unborn son was transferred to another bigger hospital where I gave birth naturally to him he was born blue and needed resus he was given only a 20 per cent chance of survival but low and behold after been given blood transfusion after blood transfusion the doctors told me to give a drug called Octreotide a go this was his only hope to stop the fluid. Cian had fluid around his gut and his lungs he had hypogammaglobulinaemia he required repeat chest drains and was ventolated for 3 weeks then weaned onto low flow oxygen.
I am amazed to tell you not to give up hope as my little boy has just celebrated his 2nd birthday he is now off oxygen during the day but still needs it at night for now. He goes to mother and toddler and he is just like any other boy of his age.
Please please email me if you need to talk I am lucky but the odds were against me and I came ever so close to losing my baby. It is a comfort to realise you are not the only one. There is hope but you need to be strong the doctors couldnt tell me either what caused this to happen to me and to this day I still think there is something wrong with me.
Take care and take your time to deal with what life has thrown at you.

Reoccuring Hydrops

Hello,
This is the first time I have used this site...searching for people, mothers, doctors, survivors...answers...
I am 30 years old and have had 2 baby girls with non-immune Hydrops...
I lost my first baby girl in 2006 at about 24 weeks. My second in 2007 at about 25 weeks. I am still searching for answers...
Both babies had non-immune hydrops with no other diagnoses. MANY tests were performed and eveything was normal...
Please respond...If you would like to chat or hear more details or if I can HELP you!
Thank you!
Toni

Hi,
My son Lachlan was born Dec 07 at 31 +6 weeks with non-immune hydrops fetalis, his 20 week scan picked up excess fluid on the lungs. He had an in-utero shunt operation to insert chest drains at 31 +3 weeks and I delivered him 3 days later. He arrived not breathing, straight onto ventilation and spent the next 70 days in NICU with severe respiratory problems. We nearly lost him many times. He is home now, 4 months old (2 months adjusted) & doing pretty well except for bad reflux & more recently, kidney stones. It's hard to find information on this disease - we never found out the cause despite extensive testing.
I want to find out if I have future pregnancies, what are the chances this could happen again?
Also, my placenta had virtually disintegrated, basically had gone rotten by the time he was born, did anyone else who delivered a hydrops baby have this?

So Sorry!

Thank you for encouraging me but s not that easy in this stage.I hate it but I know it because I experienced it after the loss of my first baby that time is very effective in giving you hopes again and feeling less pain when you look at the pictures of your death babies.But specially after the second loss I think it is gonna take even more time to be able to" live "again.I don't want to but I guess it is part of the punishment portioned very generously for me.Genetic counseling is possible only after they have a clue,no matter how small,but we still don't have the least clue about why my babies get this sickness all the sudden at 29 weeks of gestation and then die sooner then you can prepare yourself for the loss.I know,nobody can be ever be prepared for a loss,I am silly .It was justa thought.
Now I have an other question,I did not havea period yet since I had my baby except the normal bleeding after delivery but that was a while ago,three months.I never was late with my periode.Do you think that's normal(I had an other c-section with my first one and than my cycle came back normal )or I can go into menopause at 34?That would be just great,than I really don't see why I would live an other day on this earth!Did you hear or have anything like that,missing period for a prolonged time after delivery?I never had a day late in my life,exept when I was pregnant.I can't be pregnant again,we use protection.

I'm so sorry! As I read your story tear rolled down my cheek, because I know to well what your going through. I just lost my son on 11/19/07 to non-immune hydrops, test after test they did on me NO ANSWERS! WHY US! we traveld for answer but got none. My doctor keeps saying that its nothing to worrie it shouldn't happen again its rear. I don't have any answers for you, you did everything I did. I need answers too!!! please anyone.

Sophia's battle with hydrops

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

Please check it out.

I am hoping as more people join, we can find answers.

My lovely baby boy had Hydrops

Hi, I am new on the site

I was so sad to read the postings of babies who had hydrops and not survived, I know exactly how you feel...

Just over 3 weeks ago I was 7 months pregnant. I went for a scan to discover my baby boy had hydrops but was told he could be treated in the womb with a blood transfusion. I was told to make my way to the Labour ward to be monitored until the transfusion in 4 hours. About 20 mins later in the Labour ward I had the baby monitor strapped to me when it was discovered there was a problem with the heartbeat - I was given a crash C-section but it was too late.

Two weeks before I suddenly got polyhydramnios (too much amniotic fluid) and I am Rhesus negative. I have a bad history, my daughter was born with PPHN and anemia and was not expected to survive but amazingly she made a full recovery and is now 2! I also had very bad polyhydramnios when I was pregnant with her.

The hospital have told me my baby was completely fine one week before he died (as I went in complaining of terrible pain in my tummy). Although we are still waiting for test results it looks like I developed an antibody which attacked my babies red blood cells - leading to severe anemia and hydrops.

I want to understand more about this and am very interested to hear from anyone who has experienced this.

I miss my baby so much - I have never felt pain like this

My baby girl had hydrops

I know what you have experienced! My baby girl passed away at 23 weeks of pregnancy on 11/24/07 from hydrops fetalis. She was diagnosed at 19 weeks and the fluid just rapidly progressed. She was diagnosed with non-immune hydrops fetalis. The doctors ruled out all the common causes and like your babies, all of our tests were normal as well. We were not able to determine the cause. I am currently pregnant again and we just had our 12 week ultrasound. Everything looked good but I am so scared that this baby will have the same outcome. We will be having an ultrasound each week so they will be able to see the fluid alot sooner if it appears.

Hello,
This is the first time I have used this site...searching for people, mothers, doctors, survivors...answers...
I am 30 years old and have had 2 baby girls with non-immune Hydrops...
I lost my first baby girl in 2006 at about 24 weeks. My second in 2007 at about 25 weeks. I am still searching for answers...
Both babies had non-immune hydrops with no other diagnoses. MANY tests were performed and eveything was normal...
Please respond...If you would like to chat or hear more details or if I can HELP you!
Thank you!
Toni

I hear all of your pain. I found out I was pregnant with my first baby in 12/06 due Aug 07. At our 18 week ultrasound we found out our baby had no heartbeat. They induced me and it took 24 hours for me to deliver my 8 1/2 in. 9 oz. baby boy. We don't know why we lost him, all blood work on me and baby came back normal as well as the autopsy. That was very hard for my husband and I. We took our time trying again and ended up conceiving on Memorial Day 08. I am 21 weeks and 3 days pregnant right now and was told on Friday that my son has fetal hydrops, a VSD hole in his heart and a problem with his aorta. So now we are just waiting for the inevitable. I just want one healthy baby, why does it feel like that is so much to ask for?

I lost two hydrops baby boy

Hi everybody!I have a very sad storry.I just lost my second baby due to this very rare sickness called hydrops fetalis.The first one I lost three years ago at birth.At 6 and a half months they discovered fluid around the longs of my baby.Untill that day everything was just perfect,we were very excited about the baby's arival.I got hospitalized,I had the best doctors,in the USA,and after all testings they could not find the underlying cause so all they did was to keep me monitoized and pull out the fluid from her chest cavity three times while still in my belly,unsuccesfullY.Finally they proceded with c-section hoping that can help her more outside,but she could not make it.I did not agree with authopsy,was too much for me to know her cut up.I did not want other children at thet time,but soon I realized that life without them is so sour.I seeked the best perinatalogist and he adviced me that no chance to repet this,go ahead and be pregnant.I trusted him and got pregnant full of hope.He was closely monitoring the fluid recurrance to make sure everything is normal.At 27 weeks I had untrasound and no fluid was seen.Two weeks later a went to this 4D sonogramms,excited to see my baby like a real one and they told me about the water around her lungs.I knew it is over,I allready pictured all the heardbreaking steps I have to go thru again,I just wanted to die, me too when the baby was going to.This time they removed her right away from my belly hoping to help her differently than first time since that failed.Surprisingly she survived.I felt blessed because I was not expecting her to be alive.She was so strong and survived 53 days,but they still could not find the underlying cause in order to threat her and the water kept acumulating in her body,the kidney shootdown from to much diuretics,and died.My and my husband's tests all all very good,her millions of testing came back all normal but I keep loosing my precious babies and the sense of living,all I wish is to die.
I open this topic in case somebody else is locking for information about this sickness,I may help because I am allready very documented,allmost like a doctor,or maybe somebody can help me.Any type of help would be appreciated.I know is a rare sickness,I may not get any anwer at all to my posting but I do not havE anything to lose anymore,no more babies in my sitaution,a could not bear to go thru third time to this,so this is all I can do.

Hi,I'm new on the site.I'm now 28 and from Iran. I'm so sorry for your sad story.I really know what you have experienced and your feelings.I had 2 painful pregnancy as same.I lost 2 little baby boys due to non-immune hydrops.my husband and I never never had such a painful experiences in our beautiful love life.

about 4 years ago I had an unsuccessful pregnancy.when I was passing my 23 gestational age my doctor found fluid around the longs ,chest and in the stomache of the fetus.two weeks before visiting doctor every thing was perfect.My husband and I were very joyful,but after 3d ultrasound all our sweet dreams were died,I also was going to die.doctor told us the pregnancy had to be finished.After c-section we delivered the fetus to pathologist for autopsy,some tests.after doing many tests,unfortunately nothing diagnoised,nothing!
every tests was ok,even the body of my little baby was very perfect,unbelievable.after passing a year we decided to have a baby again.then we chose one of the best doctor i have known.we were really happy and so excited because my doctor and some other told that it doesn't happen again.but i was alittle scaring but every thing seemed good.at 23 week I did 3d and it showed no fluid but we were told about the thickness of nautral translucency behind the baby neck. and doctor told it might be ok! my doctor did aminosentez tests to make sure of it.it took about two weeks.the results were very good.we were ful of joy.I found life ful of happiness, so we had a trip. after 27 weeks,about one month later than the first baby fluid was seen again.i was nothing just a poor mother and nothing to do just crying.all happiness was ruined again.doctor told that the thickness was due to fluid.It seemed that this time it began from the neck. I had c-section again and much more tests,fetus autopsy, ...but no more better results were found, nothing was diagnosed,every thing was ok again.
about 2 years is passing from the second sad experience and every thing is still vague. but i don't give up the life.My husband and I love each other and our love life.now doctor suggests us to take an opportunity by surrogacy(surrogate mother),and by changing the gender of fetus.may be it works, but he told us it may happen again.we hope and wish to have a healthy baby.a healthy and joyful family.God loves and helps us.:p

I am so sorry to hear of you loss. My only experience of this condition is of when I worked as a nurse in a SCBU unit and I was down in theatre with paed when a baby was born with it. Sadly little babe passed on unit.

I still remember that day, baby and the family. I know it will be little consolation, but please remember that your little girl will have touched many hearts in her short time on earth.

Big hug to you,
Barbara x

Hydrop fetalis

I know it has been some time since I first read your messages so I book marked them as I knew that one day I would be able to write something positive. After losing my first daughter to late onset GBS my second daughter was born in 2002. Unfortunately, I then went on to have three miscarriages, the first at 23wks, the second at 19wks and twins at 18wks - all boys and all died as a result of non immune hydrop fetalis. I believe this a genetic problem for me and only affects the boys that I carry. This was never confirmed but I knew it was not a chance occurance (1 in 4 were the odds I was given). I finally conceived another girl who is now a healthy and lively 7 month old. I couldn't stop trying until I knew for sure whether this only affected the boys that I carried - which it does and I am so glad now that I didn't give up trying. I hope this will bring some strength to others. It has been a very long and difficult journey for me and my family but when I look at my two girls I know it has been worth it. Jx

Steroid treatment?

Hi Girls! I 've had 2 early miscarriages and lost 1 babyboy recently due unexplained HF in the last 1,5 years. My partner has been on steroids for his psoriasis for many years. Any similiar experiences with steroids? I don't have another explanation yet, but will let you know about any progress in this matter. Thanks E.

I am so sorry to hear your loss due to Hydrops fetalis.
I also lost my Durva ( babygirl, on June 25th 2010) when she was in my womb ,34 week old, till that she was perfect My doctor don't understand why this has happen.
There was no viral infection , no known cause. I can understand your feelings .very difficult , I am always feeling that I am very bad mama .

Vaishali,
India

A miracle Baby girl

Hello everyone,
I'm very sorry for your losses, I just can imagine how you feel, but to be honest with you I thought I was going to be in the same position you are.
I want to share my story to help is some way that there is alway hope and miracles do exists.
My nightmare sarted with the First test (13th week)when my Dr. found out there was an increased nuclear thickness so they sent me with a Geneticist who did a CVS to sadly find that my baby was very very sick, with a lot of fluid in the abdomen, around the heart and very swollen face and neck.
All the tests (CVS, infections, heart, micro arrey) came back normal but as the pregnancy progressed they were runing out of things to look for, the doctors told me that they have had ruled out all the possibles reasons without finding WHY???
Around 20 weeks I was told I had to make a decision: stop pregnancy or continue and hoping for the best although the prognosis was very very poor.
We decided to continue knowing that my baby's heart could stop any minute and my pregnancy was monitored very closely, I had detail ultrasounds every week and NST's twice a week.
At almost 38 weeks my water broke and we drove to he hospital. I gave birth a baby arond 3:45am, but it wasn't until the next morning the perinatologist could give us the results of the X-Rays and ultrasounds on her and every body were sorprised that she didn't have extra fluide in the abdomen or around the heart anymore.
Until today nobody knows what caused the non inmune hydrops in my baby neither why it desapered as magic as soon as she was born, and to be honest that doesn't matter any more.
Te doctors kept my baby in the NICU for a week for observation and finally we brought her home with us.
Today Giana is a healthy 5 month old baby and her belly look different because all the fluid that was in her tummy durig the pregnancy it's like when you lose weight.
Please don't lose hope and keep in mind that doctors don't have all the answers and solution we need and there are miracles and Giana is one of them. That is the reason of her name, wich means God's Grace.
I really hope my story help somebody who is going through the same or similar situations and please accept my condolences to the ones who have lost a litlle angel.
Regards,