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

[katie_m_2018]

My baby was just diagnosed yesterday with a CH at 12 weeks 1 day. I am devistated. I already had genetic testing done the week prior and the results came back negative for downs and turners. I go to a specialist on Tuesday to get genetic counseling. I need hope. This is my first pregnancy and I am at a loss. I feel as though I’m living in a nightmare. Please pray for my husband and I and our baby. We were set to have our gender reveal this weekend and we can’t even look at the gender results as we are in shock of what we have just learned. I hope I can be as strong as some of you...

[misweetie004]

Hello all-
  I will be 13 weeks pregnant tomorrow. At my 12 week nuchal translucency testing I was told that my baby has a cystic hygroma measuring 7mm. We immediately went for genetic counseling the next day and had CVS done. Results came back today positive for Turners syndrome. I have read that between the two diagnosis the prognosis is not very promising to delivering term. Any thoughts?

[isda76]

I was just told yesterday that my baby have cystic hydroma. I'm 9 weeks pregnant. My OB intial send me to the specialist because of the hydrops diagnosis. I was hoping that the specialist will tell me that I have nothing to worry about that everything is going to be okay. This will be my 3rd pregnancy. My kids are 11 years old and 14 months. First pregnancy I was told my baby will have down syndrome because she was small in size the dr suggested amnio or terminating the pregnancy. I chose not to do either and If I would have listen I wouldn't have my daughter. she was born health 7lbs and 11.5 oz.
With my second I initially having a premature contraction and I had to be put on bedrest. at 4months I was diagnosed on having placenta previa. At 5 months just to follow up I was diagnosed with vaso previa. My dr referred me to a specialist and i had to get a weekly check up. After 2 visits with the specialist I was told that I dont have a vaso previa but a slight placenta previa. This was at 8 months. I was still having premature contractions but I end up carrying my baby full term born health at 8lbs 3 oz.
Before Thursday my husband and I are thinking that my OB is being cautious. After hearing all the negative informations about cystic hydroma I am lost for words. i can't even talked to my husband about it on the drive home. He is also speechless.
I've quite few posting and I realized that others their dr took time to talked to them and explained details of the diagnosis meaning the ultrasound, the sized of the cyst. My specialist didn't even showed me the ultrasound and explained why he come up with the diagnosis. On Monday I'm thinking of calling my OB and asked if she can recommend me to a different specialist. I would like a second opinion.
I am looking for some hope that everything is going to be okay. we are really excited about this pregnancy eventhough it was unexpected as all the other 2.

[Megan0701]

Yes! I will send you a private message with my information :)

[clintongal]

Please give me another way to get in touch with you about CH-I have read so many of the posts you have wrote.I tried to find you on fb but couldn't...I have many questions--Forever grateful

[believe607]

Hey! sorry its been a while. my little girl had pnemonia! she doing much better now.
i'm doing quite well with the news of our results. it surprised me that she had edwards syndrome. but thrilled to found out we had a sweet little girl. she is in the Lord's arms now healthy as can be. that brings us such comfort to know she is no longer suffering. we love her so dearly and we cant wait to meet her one sweet day.
i love this thread! i will keep checking in to see if anyone else needs encouragement and to let you know when we might be expecting again. we're officially trying for a few weeks now! yay! can't wait to see a positive preg test! we would love to have 2 or 3 more! Pray for us as we are praying for all of you!

[Megan0701]

Wow. *sigh* If nothing else, I'm glad you have some answers. What a beautiful name :) Your sweet Emma Grace will be in my thoughts tonight. How are you holding up? I imagine it's quite the roller coaster. I hope that these results brought you some closure. Love and strength sent your way momma! xoxo Megan

[believe607]

hey. so sorry it took me so long. hard to find the time to get to the computer. but anyways. we found out that we had a little girl! Emma Grace. she did have trisomy 18. or edwards syndrome. thank the Lord we got some results.
Can't wait her one sweet day in heaven!

[Megan0701]

Still no news? You're so sweet. My little girl is doing well. We just celebrated her 3rd birthday on Thursday :) She's a pistol....that's for sure. She definitely keeps me on my toes! Let me know what they tell you!

[believe607]

Yeah. the nurse said the paper the doctor signed was permission to test the other viles. i haven't had a call yet. i made sure the nurse knew i wanted her to call me asap if she got results of any kind. i haven't called them yet since i have my follow up thursday. i'll just ask them then. How are you doing? how is your little girl? i bet your having as much fun as i am with my little 3 year old! i love her sooo much. she keeps our hands full !!!  i wouldn't have it any other way!

[Megan0701]

So the other viles....when were those taken??  I so hope they can find some answers for you.

[Megan0701]

Yes. I will agree with you on most all of what you've said. But like Becky said, this thread is about babies still in the womb with a CH/LM. My child, as well as most others on this thread, were given a 50-70% chance of having a chromosome abnormality. Those are the numbers...bottom line. I have NEVER treated this condition as a death sentence....never. As a matter of fact, I think I've given nothing but hope on this board. There are reasons that pregnant women take this condition seriously....because it is a serious condition. This is not just about children who are born with the condition. This is about children who have this condition in utero and can be subject to fetal demise because of the condition.  I know about the exit procedure, a friend of mine delivered her son that way because of his LM. I'm also very familiar with Dr. Waner because another friend of mine takes her daughter to see him for her LM. Yet another friend of mine has watched her daughter turn gray while doctors tried to shove a tube down her throat through the swelling of her LM in order to get her breathing again.  I'm not naive to the life of someone living with this condition. I have no doubt that all of these children will grow up to be wonderful, successful adults, and I have never so much as implied otherwise. If you would like to start a new thread using the term Lymphatic Malformation, then by all means. This thread was started YEARS ago and was continued by all of us who have received a cystic hygroma diagnosis. Seemingly, you're the only one who has been confused by the term. I will continue posting in this thread as I have done for the last 3 years. I want this to be a place where women who are desperate for support can come to and feel supported. Not judged and criticized for not using the correct "terminology."

[believe607]

Hello. i just wanted to say that i'm sure there are other threads on the whole world wide web that are for people living with LM. this thread is for pregnant women whose children are diagnosed with a cystic hygroma(or LM) whatever you perfer to call it while in the womb. i beleive all of our ob/gyn's have called it cystic hygorma. i have found this thread to be of GREAT comfort in my time of difficulty. i would have found it helpful either way if my child survived or not. if my child did survive, i would have found another thread that is for children living with ch or lm in which i would love to have talk to you about surgery's needed.  There are good people here who have baby's that have passed away in utero, and people whose baby's have survived. i think u are a great help for the parents with children who have survived pregnancy with ch and are now living with it.
we're not doctors on here. we're parents dealing with are baby's in utero having been diagnosed with ch and are going through medical testing to rule out chromosone abnormalities.

[sweetpea03]

If you look up scholarly articles on LMs, the majority of cases of them occur when there are NO chromosomal abnormalities. Most of the cases are just random flukes that happen for unknown reasons. I live with a LM myself and know what it is like to go through surgery after surgery. I have a couple friends I met online with LM as well who have been through similar experiences. We all live normal lives, just with some extra medical care. I've been through over 8 surgeries(lost count), but I'm involved in sports and am in my 3rd year at a great university. I hate when people treat the condition as a death sentence. With proper medical care, even extreme cases can be handled and dealt with. They do exit procedures for those with LMs which affect the air way, which can save the baby's life. Occasionally, more on the rare side, a baby will not make it, but that's not the majority of cases. A very important thing to have is a doctor who has experience with the condition. Dr Waner is world renowned in the area of LMs, Dr Reinisch is another amazing surgeon, etc. The most important thing for a person with LM is to have a good doctor, with plenty of experience with the condition. I think you should start a new thread with better terminology, then you can write down the info people can see in plain terms that are easily understood. Keeping the CH title can only confuse people.

[believe607]

Hey! this past thursday has been 2 weeks since we lost our baby. the doctor said the lab would call us withing 2 weeks. well they didnt call so i called my doc. his nurse picked up and said she thinks she saw something about it and put me on hold. she told me she saw the paper work when it came in and didn't know what it was so she just put it in my file.so anyways, she got the paper work out and said the test where inconclusive and they needed the doc signature to test 6 other viles that they had.the test was inconclusive because it was a byopsy of the baby. the baby was already gone, so there was nothing living to test. the doctor even told me that when i was in the hospital. he wanted to test it anyway just in case.he thought maybe we could get some results from the placenta.but for some reason only the byopsy of the baby was tested. so i told her to get him to sign it and fax it off!!!!! so now their doing fish test on the other viles, so hopefuly we will hear something real soon. i pray the others vile's are testable.
pray for me! i really want atleast to know if we had a boy or a girl!!! :(

[Megan0701]

I'm glad to hear you're healing physically. Surely you've gotten results by now? I just wanted to post and let you know that I'm still here and I'm still checking in :) Take care of yourself momma!!

xoxo
Megan

[believe607]

Hi megan. just wanted to let you know we are still waiting for the phone to ring from the lab to tell us if we had a boy or a girl and if there were any chromosones. i'm feeling so much better. engorged breast have subsided, and i had a problem with pain and to much bleeding the first week of recovery. i went to the doc and he gave me a pill to contract my uterus. it worked wonders. no more pain or bleeding. i'm glad i didn't have to have a d&c! Thank the Lord! we will try again in a few months. i have some issues to work out first. dentist visit,make sure everything is ok down there, and ect. i can't wait to try again! my husband isn't shaken a bit about our outcome of this baby. he's ready to have a twins or more! haha! although we did say if we have another miscarriage, that'll be it for us. prayfully the Lord will bless us with a healthy baby next time! This experience sure has me holding onto my little 3 year old! she's been a little trooper through all of this. she tells everyone she has a baby sister in heaven. maybe she knows something we don't! :)as soon as we find out what gender, we will let you know what we are naming the little angel.

[Megan0701]

I was worried about you....and rightfully so it seems. My heart hurts so badly for you. I am so incredibly sorry for what you've just had to endure. I can't even begin to imagine what you must be feeling right now. Please please keep me posted on your story. How you're doing and hopefully with a name for your sweet babe. You will certainly be in my thoughts tonight. Take care of yourself. Again, my deepest most sincere condolences to you and your husband.

[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! :)