cystic hygroma

[safia]

hi this is about my sister in law she has been diagnosed with a cystic hygroma and has an amnio that has returned negative so it is not chromosonal, she has another appointment 04 13 i just wondered if anyone else has experienced this?    any reply will be gratefully received  thanks safia

[Stacie30]

i know someone whos fetus had one of those so severe they were worried about airway obstruction. she had a choice of a very complicated inutero surgery or abortion as the baby definitely would not live if born with the hyrgroma... she sadly chose abortion because $$ and rist of future fertility was a huge risk, but as i said her baby's was very severe...

[safia]

thanks for ur replt this baby has from the head and down the throat and into the abdomen     does anyone know of any sites that might help?

[janet1414]

My daughter is 11 weeks and was just diagnoses with cystic hygroma.  They told us that the baby would not survive, but I have read on here of people who have this and talk about having a normal life.  They have not been able to do amnio yet.  we was also told that this disorder also causes heart problems.   It seems like a lot of conflicting information.  can anyone shed some light on this.

[Megan0701]

I am 18 weeks pregnant and my little girl was diagnosed with a cystic hygroma at 14 weeks. I had an amnio done and it all came back normal, so no chromosome abnormalities. Her hygroma has shrunk since it was first detected at 12 weeks. How big is your baby's hygroma? Where is it located? My doctors have never told me that my baby would not survive. Her hygroma is on the back of her neck and has gone from 6mm to 5mm as of 2 weeks ago. I have been seeing a perinatologist and I will also have to see a pediatric cardiologist in a few weeks to rule out a heart defect. Basically, get the amnio done. If it comes back normal, then you've eliminated that problem. They'll want to monitor the hygroma just to make sure it doesn't grow or extend to other parts of the body. If it's just the cystic hygroma with no other abnormalities, the prognosis is pretty good. I know if fetal hydrops develop, there is a 100% mortality rate. But again, if it's an isolated cystic hygroma there's a good chance of survival. Lots of these cases resolve themselves and the hygromas just diminish completely. I know I'm kind of all over the place, but I've been doing nothing but research for the past 5 weeks and there's so much information. I hope some of this helped....if you were even able to follow my randomness! I know how scary this is. Especially when you start researching online.....there are some really terrible things on the internet. If I can help in any way, please let me know!

[rhiandzoey]

I am 16 weeks and the other day my baby girl was diagnosed with cystic hygroma ,and another chromosome abnormally, called turners syndrome.My baby girl has 2 cysts on her neck, and they look like they are each the size of her head....but my doctor said that they appear bigger on the ultrasound because there is no gravity in the womb to weight them down.....so they are kind of...floating.I am afraid her heart will give out due to the size of both of the cysts...because they ARE large.I'm glad to find people that have the same thing or that are going through the same thing as I am.I have been reading up on both turners syndrome and cystic hygroma  just for my own knowledge and comfort....Any advice?

[Amanda1111]

Your post gave me alot of hope.  It's great news that your baby's hygroma has decreased in size. I am 13 weeks pregnant and was told yesterday that my baby has a cystic hygroma.  It is on the side of the neck and measures just over 5mm.  I am meeting with my obstetrician in a couple of day and will request an amnio.  I know I am at higher risk of chromosome abnormalities due to my age (41), but I still have hope.  I agree with you about all of the info on the internet.  I sometimes feel that I should stop reading it because alot of it is scary, but then on the otherhand, I want to learn as much as I can.  How is your baby doing now?

[Megan0701]

I'm so sorry you're going through this. I was lucky enough to have clear amnio results. However, I always thought to myself that if it had to be something, I'd want it to be Turners. Before I got my amnio results back, the doctors told me it was most likely Turners, so of course I went in search of support. I found so many women who have wonderful, perfect daughters with Turner Syndrome. There are so many growth hormones and treatments that eliminate so many of the issues Turners babies have. I'm sure you've done your research and if you're anything like me, you're more focused on just getting your baby girl to live to term. I know how scary it can be to just sit and wonder if she will make it. How is her heart?? Have they taken a good look at it yet? The fact that you've already made it to 16 weeks is fantastic! I'll be praying for you and your baby girl! Please keep us updated! Oh, and I don't know if this would help you or not, but I rented a baby doppler. The fact that she was at such high risk for cardiac failure was enough reason for me to rent it. It made me feel so much better to hear her heart beat every day. Good luck!!

[Megan0701]

Your story starts out exactly like mine! I was first told of the problem at barely 12 weeks and she was diagnosed at 14 weeks.  I'm 22 weeks now and as of 20 weeks, the hygroma was nearly gone. It's still there, but it hardly even noticeable to the untrained eye. I have since gone to a pediatric cardiologist to have a fetal echo done on her heart and that came back perfect. No heart defects! Now, there is no reason to think that I won't give birth to a perfectly healthy little girl. I'm telling you, I thought there was no chance. Everyone told me to stay positive and keep hope, but they didn't know the statistics. I remained optimistic, but realistic through the whole thing......it drove my family crazy! But I know the statistics and I know the odds and I'm telling you that there's a huge possibility that everything will be just fine for you and your baby. I'm glad you're getting the amnio done. Do you have it scheduled yet? Make sure you ask about the FISH test too. I got the results back in 3 days. It doesn't test for everything, but it tests for all the Trisomies like Downs and Edwards and it tests for Turner Syndrome as well. It was just nice to know the big things were out of the way so much faster than the full amnio results. I hope your amnio results come back completely normal and that stupid hygroma goes away all together!! Please keep me updated on your situation!! I'll be thinking of you and your baby! Good luck to you!

[Amanda1111]

Thanks Megan.  You have no idea how much hope your story gives me.  I am trying to only think positive thoughts and that is what is getting me through each day right now when so much is unknown.  I'm seeing my obstetrician today so hopefully I will have a date set for my amnio soon after that. Thank you for thinking of us.  It means alot to me and my husband also.  I will let you know how things go.  Please keep me updated on you and your daughter.  I am so happy for you!

[newborn]

hey Amanda...my story is also just like u n megan....but i m one step further....my baby was born in july this year..n i m glad to say that he is absolutely fine...no problem what so ever..n he was also suspected for cystic hygroma n  his  chromosomes were also normal....I m sure both ur babies will be fine....prayers n beat wishes

[Megan0701]

I was just thinking about you and wondering how your pregnancy is going. Have you had the amnio yet? I don't know if you check this very often, but I check back once a week or so to see if you've updated yet! I'm hoping that everything is fine. My baby girl is doing well. I have to go back to see my specialist in a couple of weeks to check on her growth and to make sure the hygroma has gone away completely. I'm hoping that it's gone and I never have to see that man again! I hope you and your baby are well.......

[Amanda1111]

Sorry - I was too upset to write back for a while.  I had the amnio and my worst fears came true.  The baby has Downs.  We were devastated at that news especially as we also found out that the baby is a girl.  I already have 3 boys, so a girl would have been my dream come true.  I have another u/s scheduled for next week to check on the hygroma.  I am so happy for you that your daughter is doing great.  Good luck with your next appt.  Please continue to post updates on your baby.  I will keep checking this site once in a while.