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erythroblastosis fetalis / fetal hydrops

rosebud050298
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I wanted to know it anyone is familiar with fetal hydrops pr hydrops fetalis. if anyone knows anything about this please let me know.

Explore topics in this discussion:

Eclampsia Hydrops fetalis Hysterectomy Acid reflux Back pain GERD Miscarriage Pregnancy Prevacid Hernia Pain Spina bifida Cystic hygroma

22 replies

sac93022

Here are three stories about hydrops babies.
http://hygen.net/hydrops%2Dfetalis/viewforum.php?f=3&sid=e9c46d346269d1cda6 93519929e65120

Here is the main page:
http://www.hygen.net/hydrops-fetalis/index.php

Hope this helps.

kdowling

my son died of non-immune hydrops on May 26th after living for only a day. Any help I could be to you please let me know- I know much more about hydrops then I ever wanted to know.

pmz530

my daughter was born on june 25th08 with nonimmune fetal hydrops at 33 weeks gestation she is now three months old and is struggling with feedings and digestion iam looking for anyone with any help or advice

rosebud050298

First of all how is your daughter doing?
My name is Leighann
If I can be of any help let me know. I dont have much information on living with hydrops. My daughter only survived 5 weeks and she passed away 10 years ago. I dont want to get you any more upset then I am sure you are already with my story. I am currently in nursing school ( a desire that started when my daughter was sick) and with my teacher I am doing my own research on hydrops and would be glad to help you. Someone sent me some links that I havent even looked at yet but I will send them to you.

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

http://hygen.net/hydrops%2Dfetalis/viewforum.php?f=3&sid=e9c46d346269d1cda6 93519929e65120

Let me know how you make out and take care. If nothing else I can listen because I how how you feel.

pmz530

iam sorry about your daughter that hurts me to hear that it really does i cant imagine actually losing your child. they told me so many times my daughter Madalyn was not going to make it. When she was born the nicu asked me if i was going to name her.

at my 20 week ultrasound there was no sign of any problems at 28 weeks i started with severe back pain i thought i was in labor --i wasnt they gave me pain meds and sent me home never did an ultrasound. Five weeks later i went into early labor when they did the ultrasound to see how small she was they found she was about 10 pounds full of fluid,then diagnosing her with fetal hydrops.

i have been looking 4 someone to talk to on what to expect, if her behavior now is normal for her condition you wouldnt believe how many doctors and nurses have told me they honestly dont know much about hydrops i have been looking for some kind of support group of parents with babies born with hydrops i have had no luck i desperatly need someone to talk too.
--my daugher is a beautiful baby now up to 10 pounds!! she struggles with feedings she stops and cries while she is feeding she is on medicine for gerd, which helped a little she is not a big eater sometimes going 8 hrs between feedings somenites she cries for 3 hours straight unconsolable. 2 days ago her labia area swelled up suddenly with fluid it is more than double the size i took her to her pediatrician who said it might be a female hernia but couldnt make a diagnosis they refered her to a surgical specialist which cant see her till oct 15th, ughh!!

fabbymum

Hi I am new to this so hope I am doing it right. I am 27, married with 2 kids. I am 13 weeks preg and had my 1st scan last week and was told there was a nuchal fold of 6.5mm which is v high. Went for a more detailed scan yest and swelling has increased to 9.4mm and baby now has hydrops. We are completely devasted. Carrie I was reading your story and completely feel for you. I feel we have no hope whatsoever as it has been detected so early on. My consultant told us he reckons we are watching a miscarriage unfold before our eyes. I am back in next tue for another scan to monitor swelling although now that fluid is inside baby I feel there is no happy ending here. I was going to get a CVS this week but have opted for an Amnio, the doc explained that if results came back that there is no chromosome defiecency and it is in fact a healthy baby then we will only blame ourselves if I miscarry after test. I almost feel this is the Docs way of telling us not to get CVS as the inevitiable is going to happen anyway, regardless if we get this invasive procedure or not. Does anyone have any stories where hydrops was found this early on but have positive outcomes...? Pls, pls let me know....and thankyou in advance for sharing your personal stories. Also, carrie how are things with you..?

pmz530

how is everything with u&ur baby?

fabbymum

hi there, well i had a CVS and the results came back it was a little girl with Turners Syndrome. The doc wanted me to go in that day to discuss everything although when I had a scan, her wee heart had stopped beating. I'd only had a scan a few days earlier where her heart was very strong but the fluid in her chest must have been too much for the little one. It was an awful time and last week I had to be induced. She looked absolutely perfect but you could see where things had started to go wrong.
How is your little Madalyn?

pmz530

iam so sorry to hear of your baby girl my heart hurts for you my Madalyn is good, thanks for asking. My doctor told me the chances of her survival relied on how early on the hydrops developed because the earlier they develop the more they disrupt organ formation/growth. rosebud iam wondering how the research is going?

Kin

From week 20 on of my second pregnancy, I was constantly sick and I rarely get sick with "infections"...i had sinus infections, throat infections, urine infections. it was weird. At my six month check up, the dr's intern told me that my baby's heartrate was 176 (i always ask!) and i said "thats weird", its been in the 130 range since the get go...and the intern told me it was not a big deal. Two weeks later, i woke up one morning in agonizing pain. I honest thought i was going to die. I was screaming on the floor from the pain in my stomach. it lasted for one hour and then was gone. My husband insisted i go to the hospital to make sure everything was alright because he was supposed to go away for a week that night. I went to the hospital and told them i felt fine now but i didnt feel so good in the morning. They checked me and i was dehydrated - they finally got around to monitoring the baby...after bringing in 5 different machines, the nurses called the doctor and the doctor found the baby's heart rate. the nurse asked the doctor why the machine's werent picking it up and he said "its beating too fast for the heartrate monitor". Thats when i knew something wasnt right. The next thing was the ultrasound. The tech came to my room, said "hmmm..." and said that she felt we should go to the lab instead. we got to the lab and there were 6 doctors there. The doctor doing the ultrasound told me his name - and i knew he was the co-chief of OB at the hospital. i felt sick in my stomach. he started the ultrasound all he said was "248". Then he turned to me and said that my baby had fetal hydrops and that i would probably lose my baby within the next 24 hours. I was put in an ambulance down to Mt. Sinai (toronto) and my "fetus" was a patient of Sick Kids. I was put on mediciation to control my baby's heart beat (i took the max adult dosage in the hope that it would trickle down to the baby). it was hell.
Social workers and nurses came to talk to me about how i would handle the funeral etc.
Its now been over 1 year since this all happened. My son will be 1 in 4 weeks. I am crying when i write this but he is beautiful and strong and healthy and so incredibly active that he astounds us with everything he can do!!! He drives his older sister crazy the way only a baby brother can.
By 38 weeks the hydrops was gone BUT i quit my job and stayed home/hospital and rested. i went to appts 3 times a week until i delivered at 39 weeks and 3 days. the drs and nurses were shocked that we made it and that he was so healthy (over 8 lbs, 23" long).
I am writing this to give us all some hope and some wishful thinking. I know I had no hope or success stories given to me.
In the first few months it was hard - he had bad acid reflux (but he was put on prevacid disolvable tablets - 1/2 a pill 2X a day) and that controlled the non stop vomitting. He had a severe dairy allergy but he has now grown out of that. I spent the first 10 months of his life waiting for him to be taken from me. But i am now going to focus on the fact that he is here and when the drs said he wouldnt make it he did!!!
My heart goes out to every mother on this board. I still cry and just the thought of hearing those numbers "248" and how everything changed in a minute for my family.
god bless you all.

liam222

I lost my baby to this disease. I should know alot about it because I always strive to learn everything. But i can not make myself want to learn about this disease mostly because it makes me so angry.... so much in denial that i can not put it into reality so if someone else could tell me what they know it may help. I have accepted my childs death in more ways than one mindfully but I have also not accepted my childs death in my heart. I cant bring myself to research it. it hurts way too much. If you could insite me with what ever you know. I am very concerned to have another child. I am not planning to have another anytime soon by any means.... but i would adore a child of my own. If you can help please do.

liam222

you were very lucky. very . dont ever forget that. You all are blessed

Cmetcalf

On March 23, 2009, we were so excited to go for our 20 weeks ultrasound because we were going to find out the gender. We were so happy when the doctor said that it was a girl. A few seconds later, he asked us which doctor we saw for our DNA screening and we knew that something was wrong. He said that the baby had swelling around her brain and torso. We went to the specialist on March 26th and were told that our baby has hydrops and is unlikely to survive. I had an amnio on the 27th and we are waiting on the results although the specialists believes that it is Turners Syndrome. We are currently planning for the induction and burial. We are devastated.

usmcwife

Hello. I had my 19 week ultrasound yesterday and I was so excited to find out gender of the twins. Both are girls but 1 girl has cystic hydroma and fetal hydrops. The doctor said the baby wouldn't make it past 28 weeks. We are devistated. They did an amnio yesterday and should know results in a week of both babies.

thegermexican

Dear Kin.

Thank you so much for your story. Just last Tuesday I was told my baby had fetal hydrops. I keep praying for a miracle and hope that something good will come of all this. We are 21 weeks into our pregnancy and have named our lovely baby girl Lydia.

We already love her more than words can say. Lydia has a lot of fluid everywhere. The doctor says her heart could give out any day. Right now I am supposed to go in for check-ups once a week. Between the check-ups to try to make sure she is still kicking and moving. I have scheduled an appointment to get a second opinion. Not because I feel the doctor was wrong but because I am hoping that a larger hospital will have more options on how to help our little girl.

I was wondering about your baby. Was there a lot of fluid or was it just the heart beating fast? Lydia has fluid everywhere, they think her lymph node is clogged and is preventing the fluid from leaving or doing what it normally does.

I am also wondering if you have heard of any cures, were you in the hospital the entire time, after finding out the baby's heart rate was high? Did they give you any advice on what to do? I have found a few things on line, but my doctor basically told me I would probably have a misscarriage.

It was hard to hear and still hard to accept. I am greatful for your story. I am a very religious person and know that if the Lord wants us to keep her, he will help her through this, and if not, then at least I know she is with him and is in a better place.

I am struggling to accept that she may not be here with us long. She is our first baby, and I just want so much to keep her and care for her and love her and hug her and tell her mommie and daddy love her.

Again thanks for your story, it gives me hope and faith!!!

DSP728

My cousin's baby girl was diagnosed
with hydrops this past Friday. She is 21 weeks, but the baby is measuring at 17 weeks. Her doctor sent her to a specialist Monday and he gave no hope or advice.He said he felt almost certain the baby would die within the next couple of weeks.

He said if the babys size was 21 weeks then a blood transfusion could be done. However, from researching we've found that they can be done as early as 17 weeks. Does anyone have experience with this?

We thought the problem was due to the RH factor but the specialist dismissed that theory. He said the baby has a virus most likely and that she is "very very sick".
He left us with more questions than we had before. The baby was fine 3 weeks ago at last ultrasound when we found out she was a girl.


I am convinced there is something we can do.... some answer somewhere.... and am reaching out and searching for answers . I thought that maybe someone would have some wisdom to share or advice or just any type of little suggestion since my cousin was not given any.

As for my cousin, right now she is just trying to stay in bed and drink as much fluid as possibly due to her amniotic fluid being low. I bought her nutritional drink supplement to boost immunity and growth. I don't know if it will help but it couldn't hurt. We are trying anything we can.


Does anyone have any light to shed on this? Any tips or information you may have learned? This is all new to both of us and I am devoted to finding answers and doing everything possible to save her.

I feel for every mother who has posted their story on here. Even though I am not carrying the baby myself this is the most devastating thing I have ever felt and I cannot imagine how you as mothers must feel . My heart goes out to all of you.

DENIMTAJ

Hi,
I am a first time expecting mom. My son is 18 weeks old and the symptoms of his condition are alot like yours. Fluid is everywhere under his skin. He has a good heart, lungs, and brain, but under his scalp between his skull and skin and in his neck is a build up of fluid. I have found this a devastaing condition. To know that it happens in 1/3000 women completely shocks me. I have come to the conlusion that I will pay any amount of money for my son to live. As long as he is fighting so will I. Do not be discouraged because God does everything for a reason. I am scared.. no terrified to lose him.. but I keep a strong faith in God. If he can work one miracle he can work another. We are not the first and most certainly not the last to hear that "you have one choice.. ABORT.. or see how long the baby will live in you".. im positive I wasnt the only one to hear that from the doctors. What i was told is taht alot of doctors aren't equipped to handle cases such as ours so they tell u the worst. These cases are so rare that all they can say is your baby will die or they refer you to another doctor. In the mist of my pain I pray for your family as well as mine. In hopes that God will indeed work a miracle.

What I don't understand is how can one baby qualify to have a shunt or removal of fluid and another can't. Every baby should have a chance at life. Thats exactly what I am trying to do for Denim (my son)...

Continue to pray for the best but know that if God takes the baby there is something he knows that wew don't. The baby may be in terrible pain and as mothers we don't want to come to grips with that. Please keep in touch because I have been looking for someone whose baby was still young. I found you so together we will make it to the day that we have healthy babies in our lives!

DSP728

DenimTaj- you seem like a strong person. It's important not to give up, but at the same time don't blame or exhaust yourself.
The most frustrating thing to me is not being able to fix a situation. Sometimes there is nothing we can do but pray. Baby Ava died today, but I will tell you that none of us gave up hope and we all prayed until the very end.

Keep us updated on your situation and I hope a miracle happens for you!


PS- about the shunt... not sure. It was never mentioned to us.

MayGirl

My OBGYN called last Tuesday and advised my 12 wk test came back with a really thick nuchal fold (9mm - 2.5 is normal) and I was given a 1:5 chance of chromosome problems. I had a CVS test thurs but before they even got to that they advised that the baby has no chance of survival as the ultrasound showed it has Fetal Hydrops around its entire body. The tests came back positive for Turners Syndrome. I already have 3 boys so my dreams of a daughter have been shattered again.

The DR's have told me that because of the baby's Hydrops there is a risk of it passing thru the placenta which would then go into my blood stream and cause me to have sudden onset of pre-eclampsia - which would require constant monitoring as mentioned by someone above. I can't be induced because of 3 prior c-sections which cld risk a uterine rupture which would result in a full hysterectomy. C section not an option because its too small and so therefore I need to have a procedure in between this which involves dilating the cervix and a curate under ultrasound but I can't wait long because this only partially dilates the cervix.

From my research and what the dr's have told me, the degree of severity has to do with the chromosome outcome and also at what point the fetal hydrops starts. 9mm nuchal fold at 12 weeks and a diagnosis of Turners Syndrome gives my baby no chance of surviving.

I am a life long christian and very pro-life but I never expected to be in this position. I feel there is no positive outcome for me or baby. It is a heartbreaking decision. They told me that as the fetal hydrops progresses the baby's lungs and heart fill with fluid and it effectively drowns. I can't bear the thought of my little girl suffering so we have chosen for her to go and be with Jesus where she will be whole and wait for her Mummy and Daddy to come.

Remember - We did not choose this for our baby's and this is not about pro-life or not, these are very sick little babies. It is about making the best decision for your family. I still have a husband and 3 young boys who need me - God ordained their exsistence in my life also.

Sorry for the long post and I hope it helps anyone else out there who is facing this unbelievably painful news. I will pray for my little girl until the day I meet her in heaven...

kherbst3

My daughter, Danika, was diagnosed with hydrops at 27 weeks. 5 days later I went into labor and she was born on June 24th. She lived for about 40 minutes and went to sleep forever in our arms.

I have a healthy seven year old son and was curious to know what are the chances of having another baby with hydrops?

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