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

[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.