hun

stay strong! you are such an amazeing woman!!!!! i will keep you and your son in my thoughts

Thank You soo much for the support and please people that read this and believe in the power of God...PRAY!!

I will be praying for you, your family and your little one.

Hi, I see this was posted a while back but I just wanted to see how things were going with your son? My son was born in Dec 07 also with Hydrops Fetalis and also at 31 6wks.
We nearly lost him several times, but he is home now and doing ok now, except for bad reflux & just recently kidney stones.

I have never met anyone that has had the same situation as me. I am very interested in chatting with you to see what obsticals you had to cross and how you crossed them. Unfortunately my son is not home yet. He had many other complications including chronic lung disease, bronco spasms, heart problems that had to be corrected with surgery, jaundice, hernias, brain hemorrhage and brain damage. We also almost lost our son on too many different occasions some to negligence sadly enough but he is striving and will soon be home. He had to have the Tracheostomy procedure done to help with his labored breathing. It has helped but we now have to learn how to care for him with this new contraption. Its very scary. He also has brain damage from him coding and going into cardiac arrest so he cannot do the things he use to do like suck from a bottle so he had to have a Gastric tube placed for feeding. He also has been diagnosed as never being able to walk or talk after this incident.

My husband and I have waited now over 7 months to have our son home but its seems like it will never come. He will be home soon I hope and pray.

What was your experience like and where are you from? Do you have any illnesses?

Wow, you have had such a traumatic time with your baby boy. I hope he can be home with you soon.
It sounds as though you have had to deal with more medical problems than we did, and we thought we had a few!

I had a trouble free pregnancy until the 20 week scan where they discovered Lachlan had fluid around the lungs. At 31 weeks his heart was under too much pressure from all the extra fluid and I had an in-utero shunt operation to insert two chest drains into him. I delivered him 3 days later at 31 6 weeks. He was born not breathing, straight onto the ventilator. We spent 70 days in the NICU dealing with his severe respiratory problems. He had Non-immune hydrops with bilateral hydrothoraces, pneumothorax (air around the lungs) jaundice/abnormal liver function, CLD and several infections.
On Jan 1st we were told to say good bye to him and he wasn't expected to make it through the night. But he proved everyone wrong!

His adjusted age is 2 months now and we are hoping the hydrops issues are behind us.
It's hard to find information about this and even harder to find people who have gone through the same thing.

I wish you all the best with your son. He sounds unbelievably strong dealing with everything he's had to go through.

I'm sorry to hear the trials your have been facing. I too had a preemie in the NICU for qiute some time. Not quite as long as you (4months) but still long enough. I know it's a hard thing to go through. My daughter went through everything you said except for the hydrops.....plus several other complications. So I pray for you lil one to grow, thrive and get well enough to come home very soon. I also pray for peace, strength and comfort durring this time. If you ever wanna chat I'm here. Feel free to PM me anytime!


Rachel

Hello i am writing to see if anyone has answers to questions i keep going over in my head. My nephew callum born 04-08-2008 sadly only lived for 44 mins and they have put on the death certificate hydrops fetalis, now r baby was born at 36 weeks 6 days and at 9lb 13 oz. callum's heartbeat never changed right the way through the labour ( sorry i was with my sister-in-law right through her labour & birth) it was always 155 to 160 never went up & it never went down.They had never given Emma ( my sister-in-law) another scan when she asked for a growth scan the denied her this, she said this baby feels massive she even sat in front of a midwife in tears askin for help and askin could she see if Emma could have a caesarian and she said you will ahve to wait till 15th August an ask your consultant. We were not prepared for what happened on this day the 4th August but its so hard to accept as r baby Callum just looked asleep i would like to speak to anyone out there who has been through simular situation as we have to wait 6 to 9 weeks for our baby's post mortem results. Please write to me Thank You xx

Send me a private message and inclube your phone number so that we can talk further.

Hi there i dont know how to do a private message can you tell me how to do it ?? i see you are from America i am from england it might be easier to do private messages to each other.

Hi i just found this page , my son was born with hydrops ,and i know what all of you been .He was born 11.02.2007 and he is now 15 months,he was in hospital for 6 weeks,i went to the doctor for check up and he told me that he have hydrops,the sent me to the hospital and the next day he was born,that night they told us that he only have 10% to live,he was born on 32 week and his loungs was fill with fluid.Now our son is great boy,and when i look back for those days when i spent in hospital i think that never happend,but deep in my heart is still there.
Good luck!

Hi, im hoping i can find some answers and some hope on this page. last night i went into the ER because of severe cramps and during an ultrasound the doctor told me that my baby has hydrops. ive been doing a lot of research on the topic but nothing that really answers my questions. im 18 weeks pregnant and am going to a specialist tomorrow who can tell me more but from what ive read it seems like doctors are negative and just recommend an abortion. i just want to know if anyone has caught hydrops in their pregnancy and what they experienced? was the baby okay in the end would it be selfish of me to try and push my baby through this?

Hydrops fetalis is a condition in the fetus characterized by an accumulation of fluid, or edema, in at least two fetal compartments, including the subcutaneous tissue, pleura, pericardium, or in the abdomen, which is also known as ascites. The edema is usually seen in the fetal subcutaneous tissue, sometimes leading to spontaneous abortion. It is a prenatal form of heart failure, in which the heart is unable to satisfy the insatiable demand for an unusually high amount of blood flow.Treatment

The treatment depends on the cause.

Severely anemic fetuses can be treated with blood transfusions while still in the womb

My both pregnancies ended in non immune hydrops fetalis because of possible cardiomyopathy. The first case report describes a polymalformative syndrome. Some congenital malformations could be attributed to Seckel syndrome.

The following address we refer you to will give you a good idea of this complex phenomenon called hydrops fetalis : Universal edema of the newborn

Our site is intended for :

* physicians (gynecologists, geneticists, pathologists…) who have a real passion for uncommon and complex mechanisms before birth, who love caring for patients with humanity, who can question their knowledge and proceed like detectives paying attention to each detail ;

* couples whose pregnancy was affected who look for information desperately because no scientist was able to answer their questions. After your visit, you will know that you are not alone.

We are most grateful to the specialists who really helped us in our search :

* Dr Raymonde Bouvier, Edouard Herriot Hospital in Lyon (France)
* Dr Géraldine Viot, Cochin Hospital Complex, Port-Royal in Paris (France)
* Dr Marie Gonzales, Saint-Antoine Hospital in Paris (France)

We thank them very much for being available to us, spending time on analysis of the specimens we could give them, as well as for approaching their colleagues about our case. Thanks to their team work, we could get more insight into the diagnosis in view of the specimens stored by Sainte-Justine Hospital in Montreal.

Well i went to my doctors appointment and now they have found a large cystic hygroma growing on the back of the neck and told me i had basically no fluid it was as if my water had broke, also they couldnt see kidneys or a bladder or a stomach i was in shock !!! i got an amnio done and im waiting for the results my babies hear is beating amazingly and the doctors cant believe she didnt miscarry a long time ago .....???????

O girl I dono. I wish I could help you out in some way. I wish i could comfort you and tell you everything is going to be ok for sure but i cant because i dont know that. If they did a sonogram and cant see the kidneys and bladder and stomach but there is a good heart beat and they are saying they dono how you havent miss carried, then i would say you have your self a miracle baby on the way. It may not be the situation you want but a situation you will make it through and it will make you grow so much stronger. Our son was born with esophageal atresia and tracheomalacia laryngomalacia and bronchomalacia and down syndrome. Esophageal atresia is where you are born with out or part of your esophagus. And he is 16 months old to this day and going strong and he only had a 20% chance off the ventilator No one had faith in our abby but us. They said it was a miracle he is here as well and we knw that. How far long are you?

i'm on my sixth month of pregnancy and my recent utz with primary purpose to check my baby's gender revealed hydrothorax, pericardial effusion, ascite and placentomegaly suggestive of hydrops fetalis. The only choice that was offered to me by my OB and pediatrician is to terminate my pregnancy through elective C-section. As a mother i am totally wrecked and as a nurse, it left me hopeless..Research said the earlier the diagnosis the poorer the prognosis.. What i dont understand is the cause of this and so much afraid that it could be immune cause termed isoimmunization... would this be means i cant bear a normal baby anymore? i want to know the exact diagnostic procedure in finding out if its immune cause. In some ways i feel lightened to read the earlier posts.. I'm not just the only one dealing with this, still hope for changes till my last utz before my operation..

I just wanted to share with you that my nephew and his wife were pregnant with twins. One twin, Josiah, was diagnosed with severe hydrops very early on in the pregnancy and were told to terminate via selective reduction. Both hearts were very strong throughout so they decided they couldn't do it and took their chances, slim as they were. Yesterday morning she had an emergency c-section and Donovan is a healthy preemie at 2 lbs who is today already off his ventilator. Josiah, took one breath and was gone but my nephew and niece-in-law did not regret for one moment their decisions. The doctors said he would die in the women months ago and take his brother with him, but he didn't. He made it to 25 weeks which gave his brother Donovan a fighting chance of survival. It is a very personal and difficult decision but all I can say is seeing them be able to hold their baby, Josiah, in their arms regardless of the outcome was worth the difficult journey. They are now concentrating on Donovan who without his stong little angel of a twin brother, would not have been able to make it this far! Keep the faith ladies and know that God does not make mistakes!

I went to a specialist yesterday to look at my baby's intestines, which looked bright at my normal 22 week ultrasound scan. Im 24 weeks pregnant now. Anyways. He was diagnosed with Hydrops Fetalis and has edema, fluid around his heart, skull, and abdomen. (I don't know what the doctor words for those spots are.) I have been researching this condition since the minute I got home and I am FREAKING OUT. I go tomorrow for the amnio and I am going to a different specialist on Friday for a second opinion (even tho according to all of you it sounds pretty sure that he has it). I don't understand what the cause could have been. It's definently non immune because im not Rh neg (which i guess makes it immune hydrops). I tested neg for all the abnormal chromosmal disorders. ie. down syndrome, turners syndrome, spina bifida. So im completly clueless as to what it could be. Please write to me if you have any idea what you may think is going on or if you have had any similar experiences. Thanks!! P.s. this is my 2nd child and i had NO problems with my daughter.