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 don't believe anyone has ever said that a child with a CH (and yes, I do know they are called lymphatic malformations) will always have a chromosome abnormality. But there is a very high possibility of it and that cannot be disputed. Obviously not all children with it have abnormalities, mine didn't. But the bottom line is that a large percentage of them do. A CH can be an indicator of a bigger problem and there's no denying that. Yes, in most situations one can have one child with a CH/LM and others without, but if you take the time to look through this thread, there are at least 2 women who have had multiple pregnancies in which a CH was present. Of course if one is born with a LM, they CAN live completely normal lives....but that is dependent on the location of the LM. I can tell you that there is nothing normal about a child who has to endure a tracheotomy, scopes, and surgery after surgery. Or parents who have to watch their children aspirate and struggle to breathe and feed them through a tube. Their endeavors and obstacles deserve recognition.  Yes, there is a lot of misinformation out there, but that is partially credited to the outdated studies and information that most normal OB's and peri's go off of. I've spent countless hours on those websites that you mentioned, but as you said, no one can predict the outcome of a CH/LM. My daughter survived it, but in the post above yours, you'll see Becky's sweet baby didn't. The point of this entire thread is to provide hope and encouragement and personal experience for those who don't have the energy to thumb through countless studies and statistics.

[sweetpea03]

LMa are a total fluke. There is no known cause for why they occur, so to think that because one child has it, your others will, too is completely false. I've known several women who have one child with a LM and others who are completely healthy.

[sweetpea03]

Eek, so much misinformation. Just because a baby has a lymphatic malformation(the term cystic hygroma and/or lymphangioma are out dated ... -oma means tumor and it's not a tumor) doesn't mean they have any type of chromosomal abnormalities. Also those with lymphatic malformations(LMs) live very normal lives just like anyone else and I'm saying this as a person with a LM. If you want some reliable sources to look at, check out Boston Children's hospital for info on LMs or look at the Vascular Birthmark Foundation website. The National Organization for Vascular Anomalies also has some reliable info on the condition as well.

[believe607]

hey. sorry it took me a while. not good news.  :( we went to our appt and found our little one passed away nearly a week prior with hydrops. even though we knew that could happen, it was still a shock. my poor husband was so excited to see the ultrasound. he jumped up out of his seat to see the baby only to hear the tech say there's no heartbeat.that was soooo hard seeing my husband cry.
i was 17 weeks so we had to go the next day to deliver. the delivery wasn't to bad. they let me have plenty of pain meds, but man, emotional torture. we went in at 9:00 am thursday and gave birth friday morning around 3. we saw our lil tiny baby. very large hygroma. the poor little thing was so sick. i thank the Lord that He showed mercy and took our little one home. we don't know if it was a boy or girl but we sent of samples to try to find out if their was a chromosone disorder and what sex it is. the doctor thinks it might be turners. there were many things developing on time with the baby, but a few things that weren't.
but all in all, we are ok. we are handling it pretty well. talking, crying, and having peace that our baby is in perfect health in heaven where we will meat him or her one day. i really hope we can atleast find out the gender so we can name our baby.
i'm still recovering. the doc said my milk won't come in. ha. yeah right. it came only a few hours after i delivered. that hurts!!! feeling quite well today though.
last night we talked about trying again. we will. can't wait! but it will never replace our precious little baby we just said goodbye to.

[Megan0701]

How did it go???

[believe607]

Yes. Our appt is next tuesday feb 1st. thank goodness my husband and mom will be with me. Pray for us! :)