Has anyone ever been diagnosed with this condition, what was the outcome. I am 22 weeks pregnant they are now suggesting an amnio to detect chromesome disorders, have had blood work. Two ultrasounds- first one showed excessive fluid in the abdomen and the back of the neck. The next ultrasound didnt show either one of these, but this time showed edema in the scalp, small amount of fluid in the lung area and her femur bone was slightly under what it should be. I think every time I go and have another test I leave more confused.
My son was born at 31+6 weeks with Non immune Hydrops fetalis. He had excessive fluid around his lungs initially, then over his whole body.
I went into spontaneous labour 3 days after he had an in-utero shunt operation to insert chest drains into him as his heart was under too much pressure dealing with the excess fluid.
He was born not breathing, straight onto a ventilator and 70 days in NICU dealing with severe respiratory problems, collapsed lungs, infections, small brain bleed, chronic lung disease & small hole in the heart.
He overcame all of it and has been home with us now for two months and is doing well except for bad reflux and more recently, kidney stones.
Although the prognosis for hydrops babies is not great, there is always a chance. We also got told about the short femur bone could be an indicator of Downs, I did point out that his father has short legs!
I see this was posted in Feb, so I hope things are going ok with you and your little one.
hello there, just wanted to give you a little hope i hope this story helps you in some way.my daughter jessica was 19 weeks pregnant when she had her 20 week scan and they told us the baby had fluid around the heart. the doctor said don't worry usually it turns out to be nothing. well not so for my daughter. she went to a maternal fetal medicine dr. and he put us through more turmoil then i can say..they gave her another ultrasound and told us she was having a girl ( Willow Patricia). wow we were so happy but the dr. made sure we weren't for long.he said it may be a chromosone disorder and suggested amniosentisis. now my daughter was seventeen at the time and very scared. they talked about down syndrome and the trisomies which are lethal. so she decided to do the amnio.what a terrible wait we had..we looked online about the trisomies and were devastated at what we read and saw. it didn't help us at all. well then the dr. called and said the amnio was normal but he didn't believe it and still stuck to the chromosone disorder.he then suggested a echocardiogram to see if willows heart had a defect.well they weren't sure what it was and talked to her about terminating and my daughter had faith that her daughter was going to make it.they sent us to boston and boston told us the devastating news.she had severe fetal hydrops fetailis..her little heart was swinging in the fluid( congested heart failure they called it) and she had fluid in her abdomen and her lungs were compressed. went back to the maternal fetal medicine dr. after them making her wait a week for an appt. and told us she had very little amiotic fluid left and willow had a five percent chance to live. i said to him " why do we feel like you are sending us home to wait for her to die" he said " because we are". well i was not accepting that and i found her a new maternal fetal doctor who started a care plan that's all.a ultrasound once a week for 3 months( the hospital was 1 1/2 hrs away) and the hydrops started to go away and they delivered my healthy 4lbs 5 oz grandaughter 3 weeks early on 11/6/08. my point is never give up hope.the first set of drs. had given up. we had faith and believe me alot of people praying. we aren't religious people but i will tell you willow is a miracle. that is what she is known as at the drs. the miracle baby..oh and her hydrops were from contracting the parvovirus b-19. which most babies do not survive.she also had intrauterine growth restriction and low amniotic fluid.if you look on my profile the little one is willow!! the other is my older grandaughter sadie!! sorry so long but that was really the short version.
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