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Infant Cystic Hygroma

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Hi there everyone. I'm 15 weeks pregnant with my 2nd child and I just found out that my baby might have a hygroma on its neck.I have to see a specialist in feb and if it does have a hygroma on its neck then the baby has to have genetic testing. I'm really worried for my baby.Can anyone share a similar experience or similar problem and tell me what to expect??? Thanks so much in advance
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First Helper HopefilledKellyJade
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replied January 21st, 2004
Extremely eHealthy
Due to my age (34 at the time & and 2 prior miscarriages I had a cvs test at about 9 weeks which showed that the baby(a boy) suffered from trisome 18; you usually abort before you even know you're pregnant due to the massive physical & mental deformities etc.

There are many who argue that if god gives you a child you must bring it in to this world & care for it - even if that means 24 hours 7 days a week for 50 years. But what would this do to any other children you have or may want to have? What would it do to you, emotionally, psychologically? Financially? Sexually (or do you stop being a couple in that regard)?

Tell me also if ypur child would have no "quality" of life , be a vegetable or similar is that the life he or she would want, is it the life you would want for your child & is it the life that god would have wanted for his child. For me the answer was simple no<>no<>n o!!!!!!

God teaches us right from wrong by not only his words but alsao by what we see & do & how we feel about those things. I wouls not want to live as a vegetable & I would put an animal out of its pain, so why do some people want to inflict torture on other human beings????

But you must go on-line to search endines (yahoo or google) & ask what is
?, what causes it?, can it be cured totally?, what are the chances of a healthy baby being the result? What are the long term affects of infant cystic hygroma?

The moer information you can get, the better equipped you are to ask the right questions & understand them!!!! Then you can decide what you believe yo be the right choice in your situation.

God bless you & your child
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replied May 13th, 2011
Thank you so much for your post. I keep reading up on this, as our baby was diagnosed with cystic hygroma at 13 weeks. We are devistated, but all I keep reading is that people refuse to give up hope that the baby will be ok, and then they're born with diformities that are life threatening. I don't want to do that to a child! I don't want him/her to be in and out of the hospital his/her life. I don't want my baby to suffer becuase I'm so desperate for a child. I want him/her to have a good, healthy life, and having a hole in his/her heart or some other horrible condition, isn't a way of life. Am I being selfish by not continueing this pregnancy???
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replied May 18th, 2011
hi there i also got told that my son had a cystic hygroma at 20 weeks we were totaly devistated an couldnt believe what was happening,we decided to leave it for the next 2 weeks an see what happened but the growth was growin so fast it would overtake his head, there was also fluid in his lung that ment his lung wasnt goin to develop properly. there was so many bad things happening, we decided not to carry on with the pregnancy. it was the hardest decision i ever had to make. but i could not do that to my child. i also wanted to have a very healthy child. please let me no how you get on??? my heart goes out to you.
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replied November 19th, 2004
Cystic Hygroma
To kellycornwall
a couple of things one don't wait till feb to see a specialists. Go as soon as possible. I am at the moment pregnant with my first child ever and found out at my first ultrasound that my baby had a hygroma on her neck. My doctors sent me to a specialists and gentic counsler within in two days. Reasons being one hygromas can sometimes indicat other things. (like that other lady said she found out her child had trisomy 18.) there are alot of differnet things that could happen trisomy 13 or 18 both of which if you do a little research will find the child niehter lives long nor do they have really any quality of life, others can be 21 which is down syndrome, or 45 which is turner's syndrome(this is what my child has, this is in girls' but I think there is something similar to it with a different name for boys) or it could just be a hygroma.
There are a few different things one depending on your personal views towards terminating a pregnancy, and also for self knowledge and preperation on what to do either way. I hope this doesn't come off negative or scare you. I just had no knowledge of these things until I had to do all my own research, so I hope it is helpful. If you think there might be something else you want to know, just let me know and I will tell ya what I know and or give you a good place to look. But good luck with everything. And best wishes for you and your baby.
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replied March 27th, 2008
Cystic Hygroma
I am a 36 year old adult living a wonderful "normal" life with Cystic Hygroma. I have a career, I married and have 4 beautiful children despite my CH. I am so thankful my mom didn't receive a choice because I wouldn't be here writing this reply. There are other adults living life with this condition, I know because they are members of my online support group. This condition is NOT always fatal, there IS hope and termination is NOT your only option. For more information on the topic of the decision to terminate please go to my friendship page, group and blog at:

myspace page: http://profile.myspace.com/325172880

CH Group: http://groups.myspace.com/lmnetwork

As for purple333's comments these are clearly coming from someone who has no experience living with or raising someone with a disability. I speak from experience because I AM raising a son with VCFS. I am not going to pose argument as a pro-lifer simply as a parent experienced at raising a child with a disability. Not all conditions associated with CH mean 24/7 for 50 years. My mom raised me until I was 18 and for my son there are resources as he becomes an adult. What does his condition do for other children you have? Well, I have 3 other children and they have learned what most kids don't compassion. They have learned not to stare and make fun of people for their differences and in fact, my children befriend people with disabilities. They love their brother, embrace his differences and do not suffer emotionally, psychologically or financially because our family has balance. They have learned more about tollerance and respect from their brother than, they ever would have learned without him. I believe it has made them wonderful, caring and compassionate people. I am sure they would have been this despite but, they are even more because of. Clearly with 4 children having a disabled child has not harmed our sex life. If anything it has brought our hearts closer, made our love stronger and enhanced our intimate moments. It's ignorant to think you "stop being a couple". The fact is you become a better couple. I have learned more about myself and human beings in general because of my son. Our family is close and strong because of our son. I would not trade this experience for anything in the world. Please go to my support group you will receive well balanced information there that will help you make the decision that is right for you.
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replied June 14th, 2011
Hi, My baby's having Cystic Hygroma on SIDE of her right side neck, ear and face. We were unable to identify this during my pregnancy. Now she's 2 1/2 years old beautiful girl but still suffering with this sickness. She did a one major operation when she was in 3 months and removed that liquid from neck, chest and ear area. Also she followed some injection courses as well. But my little girl still suffering from this sickness and we are searching a proper medical treatments to recover her. Last week we did a MRI scan to check her current situation and the result was bad again. It started to speared through her face, neck and other parts.

We need to find a treatment to bring her back to normal...If anybody know anything about a good doctor or a treatment please please let me know.
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replied September 12th, 2011
Hi I am sorry to hear about your daughter, I was born with a cystic Hygroma in the left side of neck in 1958. Several operations from birth through age 12. I wasn't expected to live and if I lived doctors said I wouldn't walk or talk. I lived and I walk and talk fine. Wonderful childhood, but in my teens and some adult years was very self conscience and hid from the world as much as I could. I now have a good job and traveled to China and met a wonderful woman there ane we are married and have a nice home. I will pray for your daughter. My surgeon was very good. But passed away some years ago. Tag Chisholm was his name from Minneapolis area. My suggestion would be to contact the best known hospitals and go there. Such as the Mayo Hospital in Rodchester, Minnesota.
I hope and pray your baby will be ok.
Tim
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replied January 2nd, 2012
Hello, My son is 3 months and has cystic hygroma on this left cheek. We are in Minneapolis and we have great ENT doctors through Midwest Ear Nose and Throat Specialists.
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replied January 31st, 2012
Cystic Hygroma
You need to see Dr Louis Argenta at Wake Forest University Baptist Medical Center, in North Carolina. My daughter was born with cystic Hygroma and she is now 23 years old. she had a severe case and was operated on by doctors here in Michigan that claimed they knew what they were doing. They ended up paralyzing her face muscles and toungue by trying to remove too much too fast. The key is to go slow and use laser, not by cutting. She is doing better now but still dealing with the swelling. She has gone through over 30 surgeries and still dealing with it. Otherwise she is a smart beautiful girl with a good life and a boyfriend. She had to put up with a lot of mean kids growing up and a lot of adult stares but she is very tough and determined. There is a lot of hope out there if you get to the right doctor. Look up this doctor he is one of the best and has dealt with Cystic Hygroma all over the world.
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replied February 6th, 2012
Cystic hygroma w turners
My wife is 12 weeks and the doctors found a cystic hygroma from the head to the babys butt.we did a chromosone test and the baby has turners syndrome.they all suggest termination .the specialist and even the gynetic counseler. We will go on with the pregnancy even though they told us the baby has a 1% chance of survival. Any help is greatly appriciated. Thank you.
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replied June 10th, 2009
HOPE for cystic hygromas
Having gone through the experience 3yrs ago of having a baby in utero with a cystic hygroma measuring 11mm, I feel compelled to spread HOPE to all who share a similar experience. Please know that there is always hope. My son's cystic hygroma disappeared before my 7th month of pregnancy and today he is a very healthy and active 2 1/2 yr old boy! Praise God!
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replied August 3rd, 2009
hi
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replied September 30th, 2009
CH
kellycornwall, just be thankful that the doctors were able to detect the CH before you actually gave birth. I am also living with CH, but my parents nor the doctors had any idea that i had CH until delivery.

I am living a normal life, i have great friends a good job any everything. I have also went through 15 surgeries, hundreds of check ups, etc. but its all part of it.
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replied November 27th, 2009
My daughter was born with CH in 1975. As you can imagine no scans then etc. She appeared at birth to have no signs of CH. But durings her 6 week chech with the health viitor it was discovered as a slight swelling to the left side of her face which grew rapidly over the next two to three years. She was under a consultant at Alder Hey Hospital in Liverpool. They advised us to leave it things and see as some go.....well it started to slowly decrease in size from age 4 onwards By the age of 6 it was as if it had never been. I have watched her over the years for any signs of its return...but no. So I say that please do'nt give up there is hope...
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replied November 13th, 2011
To our surprise, our daughter was born with a large CH on the left side of her neck. She had surgery when she was 2.5 months old. All that is left of her CH is a small scar. She wasn't diagnosed with any syndromes and seems to be a perfectly normal baby. I created a blog for people who would like to share or read stories about CH. Please come and share yours!

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replied March 1st, 2012
CH diagnosed at 13 weeks 11mm in size
Hopefilledmom, did you have an amniocentesis to check chromosome abnormalities? I am going through the exact same thing, at 13 weeks baby diagnosed with CH measuring 11mm, so am now going on to have the amnio at 15 weeks to check for chromosome abnormalities.
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Users who thank HopefilledKellyJade for this post: Mommy21513 

replied March 3rd, 2012
Cystic Hygroma - 25 years later
Hello to all. I am 35 and was born with CH (neck/throat). I had 3 surgeries, one just few weeks after I was born, another one when I was 3 and a last one when I was 10. Today, I am CH free. I read the postings of parents and I am touched as they give me an idea how my parents must have felt and what they must have gone through with me. Like your kids, I had the chance to have a brave mom & dad who gave me amazing support when I needed it.

I have been living a 'normal' life for the last 25 years. If it weren't from my voice which is a little different and my scars, people would not notice a thing as my life seems so 'ordinary'. I went to school/university, I have a great job in a public environment, speak 2 languages, enjoy sports and traveling (visited 31 countries so far) and have a fiancee. There is hope, trust me. All the best to you and your children.
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replied May 22nd, 2013
Cystic hygroma
Hi, im elsie. 31 yrs old. I have a CH for almost 20 yrs in my life. I need any advice for curing this without any surgery.
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