Cystic Hygroma Questions?

[speedyz]

Our second child due in March 06 has just been diagnosed with Cystic Hygroma?  We have just had a CVS done for Chromosomal tests.  We should know prelinary results Tuesday.  

Most of what we have read is not promising.  Can anyone please share experiences.  We have been trying to stay positive but all the things we read have not been positive at all.  Can anyone tell us about Turner syndrome?  Are there different severities?  Same question regarding Down Syndrome?  

Any insight is appreciated.

[duehring]

I am so sorry. I am sure you are scared. I don't have any experience with this so I can't really help you. From what I have read on it only 50% of babies diagnosed with this have Turner Syndrome, and 10-15% have one of the Trisomy's (18,21,or 13).I am not sure what that means for the other percentage though.

Researching the internet is so scary. I am also due in March and my gestational sac is measuring on the small side and they are concerned. When I research the internet I read all kinds of horror stories. I just wish people shared their positive experiences with these things on the internet too.

Hopefully someone that has experience on this can ease your mind.

[once n ur shoes]

I just had my daughter May19 which was diagnosed with Cystic Hygroma and the cause of her getting it was by an extra chromosome21, which turns out to be; down syndrom (syndrome),turner syndrom (syndrome), and one other syndrom (syndrome) that I really dont remember.Basically her extra chromosome21 mixed with all of her chromosomes and caused her to get (Cystic Hygroma.) I found out my daughters problem when I was 20 weeks pregnant.Unfortunatly in my case the doctors said there wasn't any thing they could of done to save her and that she only had up to four weeks left and then she would die.They told me that it is an unusual case cause in only 22 and this usually happens to women over the age of 35.It wasn't mine or my daughters father fault that this had happend it was something that just happend at conception.Babies diagnosed with this,(I was told)usually do not make it and usually do not survive passed your 25 week of pregnancy.I was 23 weeks when my daughter passed and then they induced my labor.I am truely saddend by your results and if it is the same case as mine I know how hard it is for you right now.This was my first pregnancy ever and I was looking forward to motherhood and worst of all I was wanting a baby girl and the same day I found out her condition I also found out I was having a baby girl.I hope I helped you out a little atlease if any and if you need to ask anymore about it I will gladly help!

[ella may]

I am a 30-year old female with cystic hygroma.  My cystic hygroma was detected at birth, and I had surgery at age 3 weeks to remove a cyst under my tongue.  At 1 year, I had surgery to remove a mass in my neck.  At 12, I had laser surgery to remove surface hemangiomas.  I still have evidence of the cystic hygroma, particularly on the right side of my neck.  But as far as I am concerned, I AM NORMAL.  I can walk, I can talk, I can play.  In fact, I am just months away from receiving my PhD.  I understand that you are scared.  But please know that cystic hygroma is not a death sentence.  I am grateful for the 30 years I've lived so far, and I look forward to many years ahead.

[Trying4Number2]

I am not telling you this to scare you!!!  I am just sharing my story!  I was 5.5 months pregnant when I found out my daughter had systic hygroma, turner's symdrome, and a few other abnormalities.  My daughter also only had two tubes instead of three in her umbilical cord.  She had a cyst on the back of her neck bigger than her head, and she had fluid all throughout her body (under her skin).  She was not going to survive.  I had to induce labor (this was after MANY tests to confirm she would NOT make it full term) on September 14, 1999.  She was born still-born, and it was the worst day of my life.  But, I knew that it was for a reason.  I now have a beautiful healthy boy who is four years old.  He more than makes up for my loss.  *she won't be forgotten*

Now, I know that there are people surviving with cystic hygroma.  Have the doctors said anything else?  I will be praying for you & the baby!  
Keep us posted please!  I would like to know how you are doing!  I know you are scared!!!! (or were)  it's been a while since you posted.  

[carol666]

Speedyz, I suppose that by now you have the chromosomal results and know more about your baby's condition.  I've done a bit of research on cystic hygroma by looking through medical journals, as one of my twins was just diagnosed with it at 13 wks gestation.  For those diagnosed with CH, there is a very wide range in terms of severity and prognosis.  From the medical journals I learned rates of survival as well as which features of the hygroma best help predict how well the baby will do.  While the medical journals were certainly very helpful, I felt like I got a better idea of what the condition entailed by looking at this website: http://www.cystichygroma.co.uk.  This site has posts by all kinds of people affected by CH, including parents with very ill children, teenagers with CH, and 40-year-olds (yes! 40-year-olds) who have been living full lives with CH from birth.  Hopefully your doctor has provided you with more information to go on.  Let me know if you want to know any specifics of what I have learned; I'll be happy to pass it on to you.

[yoyo911]

plz where can i find best hospital or best Doc can help my child have cystic hygroma

[leah1087]

I just found out today that my unborn baby has cystic hygroma. I'm going to have Cvs done this Wednesday.  I don't know but I feel so confused and very sad at the same time, I feel that my baby is ok and I don't believe this is what they are telling me.  I'm 12 weeks and 3 days pregnant, I have been really sick with morning sickness throughout the day since i found out i was pregnant.  I don't want to lose this baby.

[w8n4myhrtniraq]

This is just my story.

In 2004 I found out that I was pregnant with twin girls. My husband and I were thrilled. We wanted a daughter so bad and God was blessing us with two. At 22 weeks, I went in for a check up and sonogram. That's when they noticed that something was wrong. I was sent to a specialist for genetic testing. At 25 weeks, they confirmed that both of my daughters had Turner's Syndrome and Cystic Hygroma. I was not willing to let go of what I so desperately wanted , so I surrendered and let God take matters intohsown hands. Angela passed away when labor started and Faith held up to her name and held on until she was born. She passed away exiting the birth canal. I held my babies for a moment. I will love them for a lifetime. Miracles come in all forms. We were waiting for my period to start birth control after the twins passed away. My period never started. I was pregnant with the most precious little boy in the world. He is the sunshine in my life and will be 3 in May.

[kurrin]

I am 23 weeks pregnant and just found out my baby has Cystic Hygroma. I have such high hopes for her. I will be seeing a specialist on the tenth of april to determin and go over everything. I just want to be prepared. They say my baby looks great and healthy accept for this cyst growing on the right side of her neck. She is such a strong little angel kicking and playing all the time. Her name is Mickenah. I am also scared for her, just thinking about it makes me sad because I just want her to be healthy, I am so glad to have found this site where I have read about people with cystic hygroma living to 36 and 40 years of age and doing well. This gives me hope. I pray all the time for her that god just be with her and I and give me the emotional strength to stay hopeful. I do not want her to feel the stress I do in the womb. I want her to feel joy and peace living in my belly. In fact she just kicked me now, lol. I love that feeling. I had an ultasound friday and I got to see her put her hand on my uturus as I felt her doing it as well. It was amazing. I am not so fearful as I know she will have loving parents who will do whatever possible to guide her to have a normal happy life. I just want her to feel powerful and loved. She is my pride and joy and she isn't even here yet. I never even could imagine the love I feel for her is so strong, know one knows until they become a mother, which I consider myself already. They say she is growing well, has a great heart and heart beat, wonderful looking spine, brain looks normal, and her organs are functioning well. So please just pray for us as I will continue to pray. The lord does amazing things and I do believe in miricals. Thanks for listening, and I am going to go read the myspace blogs on this as well.

Thanks again, Kurrin    

[mmgallivan]

I just want everyone out there to know, I am 47 yrs old, and at 22 I had my cyst removed on my neck form my cystic hygroma.  No one ever told me then, and not until today, when I started looking up info (I think it has grown back) did I ever associate it with any birth defects. The Dr's. never indicated any such thing to my mother then, or me now.  We worried about cancer then, as I was expecting to see now..imagine my suprise when I found out that I wasn't supposed to have eggs?  I have two daughters...I did have troubles getting pregnant, PCOS.  we used to joke that I was "very cystic".  By the way, I graduated from College, and I have an above average IQ.  Both of my kids do too, oh, ironically, my youngest daughter, 11yrs. (I had her at 36) she has a cyst just behind her  right ear, I really didn't think much of it.  Until now.  Mary

[sm295]

I have a 17 year old teenager who was born with Cystic Hygroma. I was 21 at the time and was expecting my first baby to be a very healthy baby. He was extemely healthy except for his Cystic Hygroma. He has undergone lots of surgery and laser treatment and OK432 injections to reduce the swelling.
I must admit that those first 10 years of his life where the hardest, how was he going to cope in society? how will people treat him? How much of the hygroma can we get rid of?
But he is an amazing person full of life with a fantastic personality, no one seems to notice it anymore, we definately don't and either do his friends. He is preparing for his year 12 exams at the moment, he has a school based apprenticeship and he is loving life.
So all I can say to those parents out there is keep strong keep focused and everything will work out fine, it is a struggle and at times your not sure how to cope but you its all worth it at the end.
We have been blessed with  two other healty boys, but I would not change anything about my first born, he is a very special person and we have a fantastic bond I suppose it was all those trips to hospital.

Regards,
SM

[theene1923]

where can i find OK432 injection just to cure my son's cystic hygroma? thanks..

[tricki45]

     My daughter Hannah was born in 2001 with Ctstic Hygroma.  Her hygroma in her neck was larger than than her head.  She has had 22 surgeries and OK432 treatments.  The cyst continue to come back in her neck, face, and in her tongue.  
     We have finially found a doctor in Manhatten, Dr. Milton Waner, who is able to help my daughter.
     We live in Mississippi and have already made 9 trips to New York.  This has been financially draining for us.
     My question is IS THERE ANY FINANCIAL HELP AVAILIBLE FOR FAMILIES THAT HAVE TO TRAVEL SO FAR FOR TREATMENT ????

[malak123]

my first misscarige had systic hygroma, is all my children going to have systic hygroma. or am i going have normalbaies.

[nettie04]

I am 44 years old 3 children, and just had an nt scan at 13 wks 2 days.  The baby has a septated cystic hygroma bilateral measuring 7.4mm  the baby has a strong heartbe at 150 bpm.  no featal hydrops, but the outcome is gloom and doom from the specialist.  An amnio will be done on the 4th if the baby survives, and all i have is prayers.  I can see how this can ultimately drive you insane.  I want  to keep positive.  This pregnancy was not planned since my three children are 14, 20, and 24. But i'm in love with this one all the same.  We need so much more answers other than wait it out and hope for the best.