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Subject: Cystic Hygroma's


Author:
Shannon
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Date Posted: 09:56:57 10/23/03 Thu

Hi everyone,

My husband and I learned 2 weeks ago during a random ultrasound that our baby has a cystic hygroma. It is a moderately large cyst on the left side of the neck. We had the amniocentesis yesterday and are anxiously waiting for the results. We are having a girl and we have been told that the most common thing to worry about is Turner's Syndrome. We don't know alot about either, alot of unanswered questions. We do know that our baby's heart is in great working condition as per our echo cardiogram. The doctors do not give the reassuring answers you want to hear. We have been told that babies dont normally live to the 2nd trimester with a hygroma, but ours has. This does make it hard to cope for the next 2-3 months not knowing a whole lot until she is delivered. Anyone with information or going thru the same situation please email me.

With GOD all things are possible!

Shannon

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


Author:
monica
[ Edit | View ]

Date Posted: 13:08:53 10/23/03 Thu

Hi Shannon,

I'm glad you wrote - but sorry about the circumstances! I have a link or two for you about TS and CH. It's great that her heart looks good - that really, really makes for a better scenario for her!

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

http://www.benotafraid.net/article.asp?id=14

http://www.benotafraid.net/article.asp?id=14

This last one involves a baby girl with serious heart defects, but since she also has TS, I thought you might be interested in taking a look.

I think your attitude is great - it really makes a difference when you are faced with something like this!

I'll check in to see how you are doing -- hoping and praying for you!!

Sincerely, Monica
[> Subject: Re: Cystic Hygroma's


Author:
Shellie
[ Edit | View ]

Date Posted: 14:00:09 10/23/03 Thu

Dear Shannon,

I'm sure you are a nervous wreck! It's great that you are seeking information and not just listening to your doctors. Hopefully you will be able to find a specialist who is willing to do his/her best to see you have a good outcome. Have your doctors talked to you about treatment options? I'll leave you with a link about fetal surgery for lymphangioma(Cystic Hygroma)

http://www.fetalsurgery.chop.edu/GNM.shtml

Shannon, I know this is a scary situation to be in! I have heard positive stories about children born with this condition. I will be praying that you will have a positve story to tell as well.

Thoughts and prayers~

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


Author:
Jeana
[ Edit | View ]

Date Posted: 10:57:10 01/26/04 Mon

It was the most difficult time of our life to find that the love and joy we were expecting was suffering and not healthy. We had to make the best decision for our baby. It was the hardest thing to do. We made it clear that spiritually this child was meant to bless our lives for only a short period of time...
[> Subject: Re: Cystic Hygroma's


Author:
Elizabeth
[ Edit | View ]

Date Posted: 13:41:15 11/07/03 Fri

I hope more than anything that your child is born healthy enough that these worries will become nothing more than a rich, but difficult, part of you history.

If you aren't able to get more encouraging news, I hope you might be able to find some peace during this waiting.

I, too, waited several months for a child to be born, knowing that she might not make it to delivery, and that her life would be very short if she were born living.

Eventually, I found peace, and came to cherish her movements inside of me. They might be the only way I came to know her while she was alive. I wrote about them at night, I talked to her in the womb. I also found a beautiful christening gown I'd had as an infant and prepared it to bring to the hospital, along with pins tighten it for this very tiny and possibly pre-term girl. I also bought a perfect tiny little outfit.

I had a bag packed early with the special things I wanted & reviewed my instructions carefully with my ob. He had an advance mtg with the hosp nursing team, so we'd have nurses who knew & would be extra supportive & actually chose our assignment.

At the hospital, she WAS born alive. :-) They took many photos and made a number of footprints. We held her and bathed her ourselves, wanting every single moment we could have with her. I had made sure that my medication wouldn't interfere with my ability to hold her and experience her (I had an epidural so I would be prepared if I needed an emergency c-section, but no other meds before).

We were very lucky, we took her home for over 5 months. In fact, I pushed the hospital into going home THAT day so we could be a family together for any time we had.

What I wish I had done (and would have been especially important to me if we had not taken her home): I wish someone had taken photos of her while her footprints were made. I wish we had made plaster hand casts and footcasts there. There was a special soap I subsequently used for her. I wish we'd used that at the hospital -- her very own scent. I wish I'd brought my own receiving blankets for her to be delivered into -- something beautiful & perfect, not the ugly hospital ones! I wish I had asked the nurse to write down what she remembered about my daughter's birth.
A tiny life has few memories, and when I could do something to make the memories more precious -- I guess more suitable to cherishing her perfectly -- it helped me.

If this is hard to read, I am sorry. I know it was hard for me to read of sadness, but I also know that I had to read that, so I felt I would cope if the worst happened. And then anything more was joy. five months of joy!!!
so beautiful.

GOOD LUCK. Again, I pray that you will not need ANY of this.
[> [> Subject: Re: Cystic Hygroma's


Author:
Sarah
[ Edit | View ]

Date Posted: 10:46:24 02/23/04 Mon

Hello, We are starting our 23rd week of pregnancy and the specailist told us that our daughter probably has Turner's and has cystic hygroma on the neck and fluid around the lungs and heart. He is pushing for termination which we have no intentions of doing! The doctors are sounding as if it's impossible for her to live. We don't know what to believe. Any advice?
[> [> [> Subject: Re: Cystic Hygroma's


Author:
Melanie
[ Edit | View ]

Date Posted: 14:31:20 02/24/04 Tue

Turner's Syndrome is not necessarily fatal, so I'm guessing he is telling you that because of the fluid around the heart and lungs. I wouldn't want to give you a false sense of hope, but doctor's are not always right. That is why termination is certainly not something he should be pushing for. There are some advantages to carrying to term, even when the prognosis is not good. They include:
You have that extra time to say goodbye to your baby and to prepare and you may have time to hold her.
You won't have to wonder whether or not your baby would have survived, you will know, and you will know that you gave her every chance.
It can be much harder in the short run but it sometimes more beneficial as far as grieving goes, in the long run to take the course you are taking, especially if you are not comfortable with termination.
Even with very sick babies, I have often heard parents comment on how these little ones touch the lives of others.

I can't tell you if it would be impossible for her to live, but she's alive now and you have her now. Like I said, doctor's are sometimes wrong... hope for the best and pray for it, and prepare yourself for the worst. That way, no matter what the outcome you will have made the necessary plans. Find a doctor that specializes in high risk pregnancy and a neonatologist that are willing to work with you.

In the meantime, you might find this of some help:


http://www.turner-syndrome-us.org/resource/resources_detail.cfm?id=109

http://www.turner-syndrome-us.org/resource/faq.html

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


Author:
monica
[ Edit | View ]

Date Posted: 11:41:57 03/03/04 Wed

Hi Sarah -- wow, we have two Sarah's with a TS diagnosis!

Well, your dr is just nutty to say that it's *impossible* for your baby to live w/ TS and cystic hygroma'and hydrops. Granted, the odds are not in your favor, but it's foolish to say impossible. More likely is that dr doesn't want to manage this pregnancy -- maybe, to give him the benefit of the doubt, he just wants you to avoid the possible pain of losing your baby. WHo knows . . . what's important is what you want.

What kind of info/resources do you think would be of help to you? Are you in info overload and just looking for support, someone to have hope with you? We can do that for you. Just tell us what you need!

The yahoo group (below) has not been active recently, but if you email the groupowner/moderater, I'm sure she will set you up with other moms -- perhaps some of them have been exactly in your shoes!

http://health.groups.yahoo.com/group/ts-pregnancy/

Okay, Sarah, we are here for you, just help us to know what your needs are!

Sincerely, Monica
[> [> [> [> Subject: Re: Cystic Hygroma's


Author:
Sarah
[ Edit | View ]

Date Posted: 15:02:58 03/03/04 Wed

Hello, I just thought I would update you guys. We just switched doctors and the new doctor found things on our records that the other doctor kept from us. We found that our baby has no kidneys and therefor will not live long after birth. Especially in addition to all of her other problems. I have ten weeks left, so I have started planning her funeral. Thanks for the support, Sarah
[> [> [> [> [> Subject: Re: Cystic Hygroma's


Author:
Monica
[ Edit | View ]

Date Posted: 15:22:24 03/03/04 Wed

Oh Sarah -- I'm so, so sorry.

Do you want to be put in touch with some other moms who lost their baby for the same reason? I know a handful of moms who would be very willing to talk with you (or email with you) and help you process what is happening, and what will happen.

Let me know -- you can email me if you like.

Hugs and prayers!

Sincerely, Monica
[> Subject: Re: Cystic Hygroma's


Author:
joanne
[ Edit | View ]

Date Posted: 06:40:09 01/20/04 Tue

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


Author:
Sarah Clarke
[ Edit | View ]

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


Author:
monica
[ Edit | View ]

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


Author:
Melanie
[ Edit | View ]

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


Author:
Susan
[ Edit | View ]

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


Author:
Lorna
[ Edit | View ]

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


Author:
Shellie
[ Edit | View ]

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


Author:
Lorna
[ Edit | View ]

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


Author:
Rachael (Thankful)
[ Edit | View ]

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


Author:
merci tuico (sad)
[ Edit | View ]

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


Author:
Kim (Hopeful)
[ Edit | View ]

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


Author:
Poliana (Faith)
[ Edit | View ]

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


Author:
Kurrin (Sad and Scared)
[ Edit | View ]

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


Author:
CJay
[ Edit | View ]

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


Author:
sean holligan (you inspire me)
[ Edit | View ]

Date Posted: 07:36:49 02/05/09 Thu

God bless you
[> [> Subject: Re: Cystic Hygroma's


Author:
parntip (sad)
[ Edit | View ]

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
[> Subject: Re: Cystic Hygroma's


Author:
tina
[ Edit | View ]

Date Posted: 12:14:27 01/23/04 Fri

just wanted to tell you our story at 23 week we were told our baby had turner syndrome and that we should terminate the baby. I wouldn't do it . I worried I would lose baby. Well our little girl is 6 months old and shows no signs of turner syndrome. she is perfect. I asked our doctor to send her to children hospital to see where the turner syndrome was and so far she hasn't done it. she say's not to worry about it cause she doesn't have it. her heart and kidneys are fine. But yet they wanted me to get rid of her at 23 weeks. thank God I listen to my heart or I would have killed a perfect baby. she is the joy of our life. find out every thing you can about what the doctors tell you and you will be in our prayers


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