Cystic hygroma

[healthybaby3]

Hi,
I just had an ultrasound at 11w2d and was told that the baby has cystic hyroma.  There is fluid behind the baby's neck.  They said it measured at 4mm.  I am told that there is 50% chance of a chromosomal abnormality and another 20-30% of genetic and non-genetic issues.  I will have a CVS done in 3 days to see if it's chromosomal.  If there is an issue I will terminate (although I am pro-life).  If it's not, there is still 20-30% chance that there is something really wrong with the baby.  They said they will keep monitoring me.  I am wondering if in the best case scenario (that it's not chromosomal and all the other tests come back good) that the baby will be fine and that they can tell me this by 21 weeks.  I have 2 healthy kids and don't want to take a chance on having a sick one.  I just can't do this to them or us.
What do you recommend ?

[bhenneker]

hi at my 12 weeks u/s they told me that my baby had cystic hygroma and that my doctor pushed me to terminate the pregnancy even before i had aan amnio done... i got my amnio done and found out that it was a girl and she had no chromosome problems.. i went on to have my 20 u/s done to see if i should be having anymore testing done and in the u/s she was a perfect little girl nothing was wrong so the doctor told me it was still my chose if i wanted to do an echo but he said he doesn't see a reason too.. so for my whole pregnancy up to 21 weeks i worried and worried something was wrong but in the end there is nothing there.. my doctor figures that some where someone messed up and nothing was really there.. before you make a descion to abort the pregnancy get the tests done...i am 22 weeks this week and i am sooooo happy i decided to get all these test done cuz nothing was wrong with her......

[healthybaby3]

Thank you so much.  This is very reassuring to hear.  I am definitely getting a CVS done next week to see if there are any chromosome problems.  We'll kind of decide after that.  Are they telling you that the child will be completely normal when born ?  Please post back with any update, I would really appreciate it.  Best of luck to you.  Do you remember if they told you how big the cystic hygroma was at 12 weeks ?

[bhenneker]

right now we have to do maybe one more u/s later on around 30+ weeks just to look at the heart one more time but if they do see something it could be just a heart mermer (which my 6 year old has and it doesn't effect him at all, no meds or doc visits due to the mermer) at the 12 weeks u/s the c/h was 5.2 mm ( so bigger then one the one your baby has). And yes they are telling me that she will be completely normal that with a c/h it could have just been a blockage or even just a bad pic at the u/s... best of luck to you also....

[healthybaby3]

Thanks for the info.  I will post back when I have any new info.  If you can let me know your DD's status, I would so appreciate it.  I don't know anyone going through this, so it's helpful to talk to someone who is in a similar boat.  I have a 6 year old too btw.

[healthybaby3]

I just had my CVS and waiting for the results.  US showed the cystic hygroma being half the size that it was 4 days ago, which is a good sign, but doesn't erase what they saw.  I am now waiting for the results of CVS.

[bhenneker]

how long does it take to get the results for a CVS??? with the amnio it took 2 weeks dor me to get it back

[healthybaby3]

I will have the results for FISH (the preliminary ones that test for the big things ) by thursday night, the final results take 10-14 days.  Now waiting.

[bhenneker]

you got lucky they wouldn't do the FISH for me because all the doctors knew that good chance i wasn't going to abort the pregnancy....i had another question was the nt being enlarged the only marker they saw???? and also i am just cerious what is your age??? hope i hear good news from you on friday....

[healthybaby3]

I am 31 years old.  I hate to say this, but I will most likely terminate if things are abnormal.  I just feel like it would not be fair to my other 2 kids.  Poor quality of life for them (and if something was to happen to DH and me, who would care for this child for the rest of their life ?)  Yes, the fluid behind the neck (and apparently back) was the only indicator, but apparently that's enough.  I asked the genetic counselor if all the tests come back good and cystic hygroma goes away, what are my chances for a healthy baby.  She said very good, but she can't give me a % without knowing when cystic hygroma went away.  CVS doctor told me that almost always CH goes away.  So I am just waiting for the results.  Will post back tomorrow.  They are also testing me for Noonan and some other skeleton disease.

[healthybaby3]

I got the results of the FISH today and they were good.  Dr thinks that most likely final ones will be OK. They are making an appt for me to see a pediatric cardiologist (who specializes in fetuses as well) at 16 weeks to do the anatomy and see how strong the heart is.

[bhenneker]

i am so happy to hear that.. that is great news..i never did do the anatomy or the echo we felt that since our 20 week u/s showed a good heart and everything else look normal to the tech and the dr. that she will be just fine... good luck keep me update to your outcome....

[healthybaby3]

I got the final results from CVS and they were normal.  Which is great.  I guess it still leaves me with 25% of something wrong.  They will now test for Noonan syndrome (which takes a long time) and do a fetal echo.  From  what I understand fetal echo is very important and can detect most heart abnormalities.  If I were you, I would demand one.  They usually do it 20-22 weeks, so I would get one ASAP (it's just a special US).  If there is something wrong, there is a lot they can do to help the baby before it's born (or be prepared for it once it is born).  I'll let you know when I find out more info.

[bhenneker]

my doctors feel that since every u/s i've had has showen no problem with the heart at all that i don't need one done escisally that i'm pass the 22 weeks to get one that doing the echo wouldn't help out at all the bones are to thick to see anything.....

[healthybaby3]

Sounds good.  I am sure they know what they are talking about.