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Subject: Re: Cystic Hygroma's


Author:
joanne
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Date Posted: 06:40:09 01/20/04 Tue
In reply to: Shannon 's message, "Cystic Hygroma's" on 09:56:57 10/23/03 Thu

hi honey,listen the exact thing has just happened to us,the only difference being the consultant said it looked like the baby had fluid coming down the arms..turners syndrome was mentioned like in your case and im carrying a girl too.
i had weeks on sick with worry was advised termination and told about the high risk of these babies not surviving.
Well on dec18th a miracle happened the hygroma resolved completely and i was told the baby looked perfectly normal.IVE not had the amnio cause we decided it would be too stressful ..the outlook now is much better they have said the baby could still have a genetic syndrome but its heart is fine which lowers the risk of it having turners.i hope its good news for you too.Try to get a second opinion ,we did and it was really reassuring also ask loads of questions until you your self feel you are in the know..keep in touch be strong and dont give up big hug joxxxxxxxxxxx

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Replies:
[> [> Subject: Re: Cystic Hygroma's


Author:
Sarah Clarke
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Date Posted: 13:42:59 03/02/04 Tue

We are in a very difficult situation. Iam 17 weeks pregnant and carrying a little girl with Turner's syndrome. Termination has been offered but we are waiting to find out as much as we can. The information is all so confusing and I really don't know how I want it to turn out. I am so scared of the future but have a long way to go if I am going to reach term. Every day I wonder if I will miscarry today but she is still alive. It is very, very hard.

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[> [> [> Subject: Re: Cystic Hygroma's


Author:
monica
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Date Posted: 08:47:34 03/03/04 Wed

Hi Sarah,

Oh I'm sure it is extremely difficult for you right now wondering if your bbaby is going to make it. Does your baby have any of the complications that sometimes come with TS -- have they found any cystic hygroma's yet? It says something that your baby has "made it" to 17 wks -- and every day that she keeps hanging on is a good thing in terms of her prognosis, since so many of these baby girls are lost in utero.

Yes, it's going to be hard on your end to keep going forward wondering what every day will bring -- but there is support out there for you to get you through this pregnancy.

What have you found so far in terms of info -- maybe we can help balance things out for you in terms of info.

Here is some info, and I'll check back in to see if you have posted:

http://www.benotafraid.net/story.asp?id=22

http://usconservatives.about.com/gi/dynamic/offsite.htm?site=http%3A%2F%2Fnews.bbc.co.uk%2Fhi%2Fenglish%2Fhealth%2Fnewsid_1183000%2F1183777.stm

http://www.aaa.dk/TURNER/ENGELSK/Lifespan.htm


Sincerely, Monica

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[> [> [> Subject: Re: Cystic Hygroma's


Author:
Melanie
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Date Posted: 02:34:04 03/04/04 Thu

I am sorry that things have been so difficult for you. It is a normal fear of every woman that she might lose her baby, and doubly so if there is any problem at all. What have the doctor's said. Have they given you any reason to hope or have they been mostly negative?

At any rate, you might find this website helpful, and it's possible you could find someone here that can help you with support where you are at:
http://www.turner-syndrome-us.org/

This is their FAQ:
http://www.turner-syndrome-us.org/resource/faq.html

Keep us posted as to how you are doing. I hope that you are able to find all of the support you need. Try contacting the Turner Syndrom Org. and see if they can find someone in your area to support you. Someone who's been there is bound to know what to expect and look for.

Take care,
Melanie

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[> [> [> Subject: Re: Cystic Hygroma's


Author:
Susan
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Date Posted: 13:42:34 03/04/04 Thu

I have a cousin, age 42, with Turner's. She is FINE. The doctors told her parents she wouldn't live past 7 years of age. She lives in Washington DC, is funny, smart, have her own place, has had a full time job as long as I can remember, and is HAPPY.

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[> [> Subject: Re: Cystic Hygroma's and low amniotic fluid


Author:
Lorna
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Date Posted: 05:41:48 04/10/05 Sun

I am 36 year old healthy woman with two healthy young daughters. I am at week 20 with my third pregnancy. At my 19th week appointment, I had an ultrasound and the Dr. said that the baby has cystic hygroma (neck region) and that I have low amniotic fluid. He also said the baby is struggling to survive and probably will not make it. We were very shocked by this news. There's no hope for this baby? I can't seem to comprehend what I'm hearing from the doctor. He is an expert in his field, but I cannot believe there is not a thing I can do. Termination is out of the question for us. Has anyone experienced the similar situation?

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[> [> [> Subject: Re: Cystic Hygroma's and low amniotic fluid


Author:
Shellie
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Date Posted: 13:15:58 04/10/05 Sun

Hi Lorna,

I'm sorry you're having to deal with a bad diagnosis. I'm with you though, I'm not giving up hope for a good outcome. It's amazing how different doctors can have totally different outlooks on the same diagnosis (and plans for treatment...I could write a book on this one). If I were you I'd seek the advice of other specialists.

When I was pregnant with my 3rd, I had low amniotic fluid (oligohydramnios) and my baby was diagnosed with IUGR(Intrauterine growth retardation). She was induced 3 weeks early because the fuild was getting way too low. In your case, I think there has to be someone willing to be proactive in insuring the best possible outcome for your little one. There are procedures that can be done while you are still pregnant, like the Amnioinfusion. They can fill your uterus with fluid. If your fluid gets too low it can cause your baby's lungs to not develope. I would talk to many doctors, as many as it takes, to locate one who is willing to take your child's life seriously and DO SOMETHING! Ask about the Amnioinfusion until you find a doctor willing to give it a try. Also, your baby can be induced quite early and still have a decent chance for survival. Talk with your doctor and ask him/her at what gestaional age your baby can be born with a good chance for survival.

By the way, in the case of my baby, she is a healthy 8 year old. I will pray that you experience a good outcome, too.

Please continue to post and keep me up to date. I truly want to know how you and baby are doing.

Thoughts and prayers~

Shellie

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[> [> [> [> Subject: Re: Cystic Hygroma's and low amniotic fluid


Author:
Lorna
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Date Posted: 02:01:24 05/04/05 Wed

Thank you Shellie for your response. I had temporarily lost the link to this forum and thank goodness I found it again! Today is our big day. We meet with the maternal fetal specialist and will find out more information. I had a lot of time to research and to come up with many questions I want answered. I also jotted down your suggestions/information as well. I will keep you updated.

Lorna

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[> [> Subject: Re: Cystic Hygroma's


Author:
Rachael (Thankful)
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Date Posted: 20:36:17 06/11/07 Mon

I have recently experienced this very scary situation of something being wrong with my baby. On May 10th on my second ultrasound, my OB said that she see's fluid bulging at my baby's neck and head area and told us we needed to see a specialist. So they scheduled me to see a high risk specialist, but the ladies who do the scheduling booked me for a month away and I was already 15 weeks along. I could not imagine waiting a month for some answers. So I took matters in my own hands and found a website under Fetal Maternal Medicine, I located the specialist name whom I was scheduled to see and found an email address for him, I sent him a message telling him how worried I was about the situation and could he please find it in his heart to squeeze me into his busy schedule, and what do you know, I got a call from his office a week later asking me if I could come that day. I joyfully went and he did an ultrasound and told us he sees 3 cysts and fluid at the neck area which he called cystic hygromas, and it is very possible there are chromosome issues involved, could be Turners, trisomy something, monosomy something, and the only way to rule that out is to do the amnio. So right then, I decided to do the amniocentisis test. Then you have to wait two weeks or so, wondering what to do. Well, I am a very strong believer in our Lord, Jesus Christ and his healing power. So, with a lot of prayer and having hands layed on me by my mother in law, she is a very spirit filled, believer in healing and the power of your tongue. Needless to say, the amniocentisis test came back all clear, no abnormalities, and we are having a healthy baby girl. On my next visit to my regular OB, the fluid is resolving itself and is barely noticable. I am just so Thankful and overjoyed that things have turned out for the best. I hope this will give others that receive this news the courage to keep believing for the best. Miracles do happen!!!!! Cystic hygromas do resolve themselves, and especially if there is not a chromosome issue involved, which I was very blessed in that aspect. I really do feel what you others like me go through, and sometimes what we want to happen, may not happen, but we just have to remember that what we give to the Lord he keeps, and things happen for a reason. Bad things do happen to good people, but the Lord told us he will never put anything on our shoulders that we can not handle. So, stay strong, and cast your cares on the Lord. He loves you!!!!

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[> [> Subject: Re: Cystic Hygroma's


Author:
merci tuico (sad)
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Date Posted: 03:00:29 03/12/08 Wed

I'm 26 wks pregnant and we just learned from an ultrasound that my baby girl have cystic hygroma, we live here in the philippines and theres so little information i can get that is published here in our country. i was told by my ob gyn thats theres only 1 specialyst doctor here. i'm so hopeless and in despair not knowing what we can do now, we are advice to monitor the progression of my pregnancy, i am so afraid of loosing the baby and at the same time not knowing if she can survive after giving birth, i have God to pray to and friends who pray for me and the baby. am grateful i found this site where i can share my feelings and that others understand

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[> [> Subject: Re: Cystic Hygroma's


Author:
Kim (Hopeful)
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Date Posted: 16:55:28 03/12/08 Wed

I am now 21 weeks pregnant with my 3rd daughter and I am age 43. I had a nuchal translucency done and was told the neck measurement was 8mm that I should terminate immediately and I was given numbers to abortion clinics. I got home cried and the next day took things into my own hands. I had a cvs done. No chromosomal abnormalties and this hospital did another scan of the Hygroma 8mm. This hospital on the other hand did everything they could to help me find an answer. I have had all testing that could be done 6 ultrasounds, bone measurements on my daughter and amazingly the Hygroma has resolved itself. I now only have to worry that there was something that was undetectable. She is truly a little fighter. My advice...Get as many opinions as you can and an educated guess isn't enough. Keep reaching for answers.

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[> [> [> Subject: Re: Cystic Hygroma's


Author:
Poliana (Faith)
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Date Posted: 17:51:02 10/31/08 Fri

Hi Kim, I'm 12 weeks pregnant and I just found out on wednesday that my baby has a CH of 7mm. I really would like to talk to someone about it. My husband and I have been reading and reading everything about it and having faith that everything is going to be ok. Can you tell me how long did it take to the CH resolve? I really would like to know how are you right now. I just got a CVS and I'm waiting the results to come back next week. It would make a big difference if we could talk a little bit. Thank you so much.

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[> [> Subject: Re: Cystic Hygroma's


Author:
Kurrin (Sad and Scared)
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Date Posted: 00:01:16 03/27/08 Thu

I just found out two days ago that my little girl has a cyst of some sort on her neck. They actually don't know what it is. I go in on April tenth to see a specialist. I am almost 23 weeks pregnant and this was just discovered. IT is 2.1 cm. I am just so scared of the unknown. I have prayer chains set up and and praying myself. I already have such a strong bond with my baby and and having such a hard time with this. I guess I just need to vent. IF anyone has any suggestions or anything to share, please do so. This is our first baby and I just think life is so hard to live even being normal I just feel so bad for her. There is absolutly no option of termination, I would never do that to my little girl. She is a fighter. They said everything else looks great, her heart, spine, size, brain, organs. It is just this thing on her neck. My poor precious angel. Thanks for listening.

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[> [> Subject: Re: Cystic Hygroma's


Author:
CJay
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Date Posted: 23:01:23 03/29/08 Sat

I am a 36 year old female living a normal life with Cystic Hygroma. I have a career, married and have healthy children who are Cystic Hygroma free. There are more adults out there like me. I started a friendship page, blog and group on MS for this condition because of postings like these. It's my desire to show you there is hope and another side to what the doctors have shown you. Termination is not your only option. Please contact me anytime and go to my page to read my blogs before you make any deisions.

Friendship Page and Blog: myspace.com/lmnetwork
Group: http://groups.myspace.com/lmnetwork

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[> [> [> Subject: Re: Cystic Hygroma's


Author:
sean holligan (you inspire me)
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Date Posted: 07:36:49 02/05/09 Thu

God bless you

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[> [> Subject: Re: Cystic Hygroma's


Author:
parntip (sad)
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Date Posted: 10:46:14 09/03/08 Wed

i am so worry about my 8 months daugter now she is cystic Hygroma since 2 month after birth and i try to take her to speciallist because it look bigger around her neck so he recommend to surgery treatment. i don't know it will be the best way for her or not, so pls. share your experience if u have. Thank YOU

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