cystic hygroma

[anca89]

thanks...ill definatley look at that sight..im not sure how developed the hydrops are..i guess the specialist is saying its a 40-60% chance she'll survive but he's putting it more on the poor side...but we belive that everything else is growing and doing just how it should..now she also has bilateral clubbed feet....and we got a second one because he wrote in his notes that he believes its a 50-70% chance its a chromosomal abnormality but when i asked what the chances are that the first amnio was wrong...when they had to run that one twice and he said he'd be very suprised if this amnio comes back abnormal!!! he said it would be easier to mistake a normal female fetus and her mothers cells together then if the fetus had something wrong because if there was something wrong it would pop up like a green thumb i guess....but we did the other one i guess just to prove them more wrong...and i dont think anything is wrong with her heart because she has always had a steady good amazing heart beat...and they've never said anything else about it..lol..and never said anything else about anyother organs being bad or not progressing how they should...the hydrop is in her belly..if that makes anydifference?!
any information that you have or that you can find would be just so appreciated! cause i cant really find anything about it..at least not alot...but thank you so much for that one link...im gonna go look at it now...i will keep you posted on anything new that i find out! hope and looking forward to speaking to you again soon! once again thank you so much!
-Bianca

[Megan0701]

Well, all children with a CH are given a 50-70% chance of chromosome abnormality. That's what my daughter was given and she is perfectly healthy. And honestly, a 40-60% chance of survival with hydrops is HUGE. I know it doesn't seem like it, but it is. My daughter was given a 3-9% chance of survival even without hydrops. So maybe they know something they're not telling you. There was actually a girl on here awhile back who's amnio came back normal, and then they called her a few days later to tell her that it was her cells that they had tested and there was a problem with her baby. So even if that had happened, they would have realized their mistake by now. And the chances of that happening are so so so slim. A lot of babies with hydrops have tons of other issues with their organs (function and placement) so that's so great that she doesn't have any problems there. How far along are you?? Around 22-23 weeks they should do a fetal echo to get a good look at her heart. I know very little about hydrops, but I know they can have several causes and I've even read that in some cases where the hydrops are caused by severe anemia, that the hydrops can be treated by a blood transfusion in the womb. Have they talked to you about Rh disease? That's another cause of hydrops. I'm Rh negative and had to receive the Rhogam (sp?) shot during my pregnancy and right after delivery. There's also the possibility that the hydrops are indicating heart failure, but if her heart looks good so far that might not be the issue. I've looked at a couple of websites since I last wrote and actually found a site that gives babies with hydrops a 50% chance (what your docs are telling you). That is such a different story than what I was told when I was pregnant. I was told that if hydrops develop, there's no chance for survival. Sounds like your docs are going off of updated studies. So many doctors (including mine) go off of studies done 15-20 years ago. Okay, I'm babbling. Sorry:) I'll keep doing some research and if I find anything worth reading, I'll send it your way. Hang in there hun.

xoxo Megan

[anca89]

oh my gosh...that is crazy! they havent even talked to me yet about a fetal echo...so i dont know if they plan on doing that because he thinks her chances are so low!!! but yeah i asked my doctor about the heart and everything else and she said that there was nothing in his findings that there was anything else wrong with her organs except the hydrop in her belly...i am rh negative too and after each amnio i got that shot and i will after prolly any testing that they have to do where our blood could mix and before and after birth..i saw that blood tranfusion thing also..i wonder what the risks are?? i can't believe they gave you a 3-9% chance and you baby is wonderful!!! and i have such a higher chance and they are kind of pushing for me to get induced early and loose her...im also measuring ALOT farther ahead then what i am...im 23 wks and 3 days today and my doc said i was measuring 28 wks!!! so im not sure if it is the hygroma that is making me measure bigger or what and if that is the case do you think that isnt good?? i asked the specialist what the chances were that they were wrong with the first amnio and he said slim because it would be easier for them to mix up normal female fetus cells and her mothers cell then it would be if there was something wrong!! (i think i told you that already) so im suprised that they messed up hers like that! so i hope our first results were right! and if she is still born with the hygroma we will unfortunatley just have to put her thru surgery to get rid of it...and maybe a transfusion to correct her hydrops...because i think one of my doctors mentioned that anemia....i have a hard time listening when things are being said i dont wanna hear lol which is horrible becasue i need to hear everything!!! thank you so much again for everything and your support! its making me feel a lot better about the situation..even tho i still need to keep everything in mind so if god forbid something bad happens im not feeling like i totally let myself down..you know?? well what did you do to cope with your situation and how did you make the decisions that you did because my boyfriend and i are so confused right now on what is right to do?!?!?!? thankyou!
-bianca

[anca89]

oh sorry..i forgot something...when we first found out about the hygroma the doctor told us that it was 1 cm which im guessing would be 10mm?? and were not sure if it has went down any..stayed the same...or gotten bigger! when we got the first amnio done we asked if how it looked and he was whispering something by the computer and we think he said it looked like it recessed (sp?) a little bit..but were not sure and when he came back to us all he said was well its still there...so im very confused and it took till our 20 wk ultrasound for me to actually see it...which might not be good..but then again maybe i knew what to look for by then....and the first couple of ultrasounds you could only see the hygroma when you looked and the baby from the side...and its still the same way now you cant see they ch till they look at the top of the head or a side view... im not sure if any of that makes a difference in anything or not..just thought i needed to tell you that...lol now im babbling :) once again thanks for everything!

[kellbellmsu]

Sorry it has been a while since my last post. We found out that the hygroma was a marker for twin to twin transfer syndrome. My cervix began to open due to the pressure from the the baby with the larger sac. We were told that we were headed to Miami for surgery to correct the TTTS. We needed one more ultra sound before leaving. Well they found that my cervix had opened even more. The doctors were scared to let me travel without having a cerclage in place. Tuesday night they put one in. On Wednesday morning they believed that my amniotic sac had broken. They detected a slow leak. They watched it all day Wednesday. Thursday morning there was no doubt that there had been a rupture. This made the surgery to correct the TTTS  impossible. They exhausted every option available to help me. The cerclage was removed and I delivered my twin girls at 4:30 Friday morning. They lived about 5 minutes. My husband and I got to hold and love on them for the few minutes they were here. I was a mama for a short while. It was a very peaceful beautiful moment. It has been a painful week. We are managing to get through. Thank you for the support that you gave me!

[Megan0701]

There are no words. I am so so so deeply sorry for your loss. I just can't even begin to imagine the pain you are feeling. You and your sweet angels will be in my thoughts always. Your strength is astounding. Take care of yourself momma. All my love and hugs sent your way.

xoxo Megan

[Denise220]

I am so sorry for your losses! Your post brought tears to my eyes. My prayers are with you and your husband that you can find some peace during this difficult time.

[Denise220]

I am glad that Megan is helping you find some resources. I have never heard that a baby with hydrops has a 50% survival chance. I thought hydrops was 100% fatal. That is great news that they have better odds now. I will try to answer any questions you have as well. My baby had a CH with no hydrops and I was given about a 20% chance that things would be ok. She ended up perfect. I measured big the whole pregnancy too. I also gained 60 lbs and had a 10 lb baby. Is the baby measuring big as well? I was told that babies with chromosomal abnormalities were usually smaller than normal so a big baby might be a good sign. I thought a fetal echo was pretty standard with a CH even if things look ok since heart defects can be related to a CH. I thought I was the only one who had 2 amnios. I feel for you. I know how uncomfortable those are. I had a 2nd because we did my first one too early and the placenta tented so they couldn't get fluid. I am surprised you had a 2nd one. I will keep you in my prayers. Please keep us posted and ask any questions you have. We are here for you.