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cystic hygroma
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
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...
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?
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.
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!
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?
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?
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!!
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!
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!
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
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.......
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.
Hello all, firstly I want to thank you all. This thread has helped calm me. My wife and I are in our late 20s. We needed to be on fertility medication to get pregnant. This is our first. This past week at our 10 week appointment, our doctor noticed an irregular nuchal. He wants us to go for a second opinion with a prenatal screening specialist. That appointment is tomorrow, and I am scared to the bone. I just don't know what is going on and I am praying for my little baby to be healthy. Being a first time potential father it is really hard for me to deal with this. My wife is emotional and well I feel that if god forbid there is something wrong that we should discuss what our next course of action would be. It is really a horrible and somewhat lonely feeling being that it took us time to get pregnant. Really it is in gods hands now, I just hope and pray that all is ok. But being in this situation is just plain horrible being that we have been so looking forward to this. I know the screening is exactly that a screening and sets off alarms...but nothing is definite till you see a specialist. I just ask that if you can pray for our little baby. I thank you all and please keep this site going, you have no idea how mych you have helped.
No need to worry at this point......I know its easier said than done but trust me every thing will be fine. My memmories are still fresh about my pregnancy when doctors talked about high nuchal transluency and I can very well relate to you. Keep us updated when ever you visit your doctor next.Prayers for lil angel not yet out in this world and best of luck
Thanks for the wishes. We went for our second opinion yesterday 12/13/07, the nt measurement was between 3.0 to 3.5. Per the physician the normal measure is 2.2 on the high end. So she told us there is a risk, she dubbed it as moderate. However this could also mean some sort of cardiac issues as well. Rather than taking a blood test and try and figure out what screening range we fall in we elected to go for a cvs. We should have the first set of results back by Monday. I've done some research online and well basically it is telling me stuff I already know. We probably have a 10 to 15% chance of something being wrong. We choose the CVS cause it is conclusive, we want a yes or no answer. I know some people will disagree, but not knowing for us is not an option. I just hope my little baby is ok. Again I don't know what normal is but from what I have read, normal on the high end is 2.2, so we know that there is a possibility that something may be wrong. Has anyone else experienced something like this?
I know how terrifying this is for you and your wife. My little girl's nuchal thickness was at 6mm at my 12 week u/s.....so double your baby's. However, I was told that the normal range was between 1 and 3mm. I think you've made the right decision by getting the CVS done. The blood tests are so inconclusive....my specialist recommended that I avoid even doing the blood test. For us, we wanted an answer....not percentages. If you've read this thread you know that everything has turned out just fine for us. I have one more u/s with my specialist to make sure the hygroma has completely gone, but after that I'm done. A lot of times....especially if it's just a thick nuchal fold.....the connection in the 2 systems is just delayed. Once that connection happens, the fluid drains and goes where it's supposed to go and everything ends up completely normal. Sometimes I've wondered how many unborn babies actually have a thick nuchal fold, but it's never detected because in most cases an u/s isn't done that early on. I hope your results come back completely normal and you can just start crossing the potential problems off your list. If I could be of any help, please just let me know! Good luck and I'll be praying for your family!
Oh honey....I'm so sorry. That's so not what I wanted to hear. I tried to imagine how I would feel if my results turned out like yours did, but I just can't. If you don't mind me asking, are you going to keep the baby? I'll be praying for strength for you and praying that your little girl's hygroma goes away and doesn't cause any more problems for her. Keep me posted when you can, I know you're in a stressful situation right now.
Thanks Megan.....it is a trying time to say the least. We are trying to be strong, I mean sometimes my mind thinks that maybe this is just a red flag and all will be ok. And then sometimes it makes me think of all the possibilities it is pretty bad. As I am sure you know, it is really tough. Thank you for your prayers it does mean a lot to me.
Well, we have still not heard anything. I really was prepared to know one way or the other today. And they still haven't got our results. That does worry me to be honest. I mean I was under the impression that if we gave the samples late Thurs that we would have heard today in the afternoon of the major tests. The fact it didn't come really sucks and both of us feel like our life is falling apart. For the first time in my life I don't know how to handle a situation, I really don't know what to do. I just keep praying that all is ok. I really just hope all is well with my little one.
Well I have a bit of good news. We found out today that the first set of tests (which I believe is called the FISH test) came back normal for the major abnormalities. The complete results are still needed, which are for the less common disorders. So we are not 100% out of the woods, however feeling much relieved. Does anyone know outside of the 5 major abnormalities, what other checks are done?
Wow this is super news......FISH results are MOST important....final report comes out normal in most of the cases if FISH is normal...I m sure it will be fine. After CVS my doctor just suggested to keep a check by U/S....I consulted high risk pregnancy radiologist and he told me that he have seen 4 such cases in his career...and when FISH was OK...it was a totally normal baby:).....he kept a check on babies heart...n after few weeks that thickness was totally gone in my case.....try to relax n most important keep ur wife happy........n after 1 or 2 months you will have a happy baby who will keep kicking inside:)....best wishes.
thanks...this was a really tough week. Its crazy I never realized how much your life can turn upside down. only a couple of more days and then we should be on cruise control (if that is possible)
Hya just found out my baby has a cystic hygroma i am 16 weeks pregnant and very frightened been reading bits but dont want to read to much on internet has i get very scarred .is there anyone out there whos baby has survived would really like to know still having to think about alot of things my head all over the place thinking .sonya x
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