Create a New Forum Admin Login Member Login Contribute to Voyager Search VoyForums Help Desk VoyForums Exchange VoyForums Directory/Categories VoyForums Homepage VoyForums News FAQ - Frequently Asked Questions

[ Show ]

Support VoyForums

[ Shrink ]

VoyForums Announcement: Programming and providing support for this service has been a labor of love since 1997. We are one of the few services online who values our users' privacy, and have never sold your information. We have even fought hard to defend your privacy in legal cases; however, we've done it with almost no financial support -- paying out of pocket to continue providing the service. Due to the issues imposed on us by advertisers, we also stopped hosting most ads on the forums many years ago. We hope you appreciate our efforts.

Show your support by donating any amount. (Note: We are still technically a for-profit company, so your contribution is not tax-deductible.) PayPal Acct: Feedback:

Donate to VoyForums (PayPal):

[ Login ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, 2 ]

Subject: Re: cystic hygroma-hydrops any help please!! Author: Leslie [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 18:13:19 09/24/03 Wed In reply to: Laura Walla 's message, "Re: cystic hygroma-hydrops any help please!!" on 13:40:24 03/07/03 Fri Hi. I am going through a similar situation and I was wondering where your baby's cystic hygroma was located? Our doctors have not discouraged us from carrying the baby, but stated that with the cystic hygroma and hydrops that was seen she has a very small chance for survival. Did your baby have hydrops also? Any information you could provide would be appreciated. We are torn as to what to do. Thanks, Leslie Smith [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 17:21:47 09/26/03 Fri Hi Leslie, I responded to Laura's message awhile back. There is a message board for women who have an ubborn baby dxed w/ Turners syndrome -- and with this there is often cystic hygroma, and sometimes fetal hydrops, too. I'll give you the url in case you want to drop the community a line and see if some of those moms went thru something similiar. It doesn't look very active right now, but probably the moms will respond if you leave a message: http://groups.yahoo.com/group/ts-pregnancy/ I hope things will turn out well for your baby, I know this is scary! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Laura Walla [ Edit | View ] Date Posted: 20:51:15 09/26/03 Fri Leslie, Hello! I am sorry, I have not checked this board in sometime. Our daughter Avery was born on 9-12-02. Her cystic hyrgroma was located on her neck and was half the size of her at birth. She did not have Turners' syndrome or hydrops, so unfortunately, I don't know much about either one. Please feel free to check out her website at www.babiesonline.com/a/averyannw/ You will see that there are very happy endings. I wish you and your family all the best. Sincerely, Laura Walla [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Leslie [ Edit | View ] Date Posted: 17:18:02 09/29/03 Mon Thank you everyone for responding to my message. I have an update since I last posted. I spoke with my doctor on Friday and the results from my CVS test came back with normal chromosomes. Which is good for this baby and future pregnancies. The doctor is saying that this baby still has a small chance, but that if we see a decrease in the hydrops and the cystic hygroma that chance becomes much greater. I go for another sonogram in two weeks, and I am very anxious. I keep hoping and praying that everything will turn out fine. We found out that we are having a little boy. We had thought previously that it was a little girl because we thought the baby would have Turner's syndrome, but since the chromosomes are normal that means there are no chromosomal syndromes. Please let me know if anyone else has experienced this, and even if you haven't I would still like to keep in touch. Thank you again for your prayers and thoughts. We need all we can get. Leslie [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 19:48:17 09/29/03 Mon Hi Leslie, Well it must be a relief to know that your baby boy doesn't have any chromosomal syndromes! Take any good news you can! We will be praying that the hygroma goes down and the hydrops resolve . . .hoping your next update is good news! Sincerely, Monica [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: leslie [ Edit | View ] Date Posted: 17:25:44 09/29/03 Mon Laura, I was wondering how your daughter is doing, if she has had an surgeries, or if she needs to. Your story gives me hope, even though Avery did not have hydrops. I hope she is doing GREAT!!!! Leslie [ Post a Reply to This Message ]

[> [> [> [> Subject: Dear Leslie.... Author: Shellie [ Edit | View ] Date Posted: 18:35:12 09/27/03 Sat I'm so very sorry that you are going through this! I'm sure you are very devastated. I will be praying for a good outcome for your little one. I'm going to give you the link to a story about a little boy born with Fetal Hydrops: http://clarionherald.org/20021106/art003.htm I would love to talk with you more, so please feel free to post here or e-mail me directly. Thoughts and prayers~ Shellie [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Michele [ Edit | View ] Date Posted: 12:29:06 09/28/03 Sun Leslie, I'm praying for you and your little one. I hope you keep posting or email some of the ladies here to get support. Take care!!! Michele [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: joanne ritson [ Edit | View ] Date Posted: 04:25:04 01/06/04 Tue hi, for the past few weeks my life has been an emotional roller coaster.our baby had alarge cystic hygroma on the back of its neck at my 7 week scan up until 18th dec i was advised the baby had some sort of chromosomal abnormality.we demanded a second opinion as i refused intrusive tests that could risk miscarriage. i was also advised termination as the size of the hygroma indicated severity of condition......dont give up a scan yesterday confirmed the hygroma had gone also the babies heart and lungs are now fine and baby is growing normally.i cannot believe a few months ago all was doom and gloom and now there is a much better out look on things.i am 22 weeeks pregnant with still a long way to go but im not giving up.all the best of luck you are in my prayers [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Aimee [ Edit | View ] Date Posted: 12:43:01 01/09/04 Fri hi there. I just found out on Jan 2nd that our baby has cystic hygroma, we got a 2nd opinion & yesterday had an ultrasound. The results were not the same now they say possibly down syndrome,because the thickness around the neck is compatible with downs. My hubby and I have decided to go ahead with amnio now because 2 tests show 2 different things. I was scheduled to have the pregnancy terminated on Jan 14th. I can't help but feel that there is nothing wrong with our baby because of what is happening but I don't want to get my hopes up either. Somebody please write back Aimee [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Melanie [ Edit | View ] Date Posted: 22:26:18 01/09/04 Fri Hi Aimee... I hope that you are right and nothing is wrong with your baby. Sometimes that does happen. As for cystic hygroma, it is not necessarily fatal. Here is a link on it, although you may have checked this out already: http://www.emedicine.com/ped/topic536.htm This site allows you to have contact with other families that have disabled children by condition: http://www.cafamily.org.uk/Direct/c95.html As for Down's Syndrome, the effects can be extremely mild, to severe. I know that doctors usually give the worst case scenarios. http://www.cafamily.org.uk/Direct/d30.html I hope these sites help. --Melanie [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Pat [ Edit | View ] Date Posted: 02:13:07 01/10/04 Sat Hi, Aimee, I have a nephew with Down Syndrome. You can read about him here: http://www.seghea.com/becky/down/downsindex.html Here's another page I'd like to recommend: http://www.nas.com/downsyn/holland.html Having a child with Down Syndrome means that your blessing is simply very different. If you have a child with DS, you can count on having a child who will teach you and your family unconditional love. You can count on a child who will also love you unconditionally, a child who will reawaken your sense of wonder, and a child who has a mission in life. You will not necessarily have a child who is seriously mentally retarded. People with DS do think differently, no question about it. But they can be very, very bright. Too bad one of my favorite TV shows is no longer being aired: Life Goes On. The actor who plays the person with DS actually has it. He is obviously intelligent and well educated. My nephew is also very intelligent. He tested out with the language development of a five year old when he was 3 1/2. The key to helping a child with DS be as "normal" as possible is early intervention. When you go to my web site, please feel free to email my sister and pick her brain on that subject. She's a walking encyclopedia on it. So if you seek early intervention programs, pay close attention and work with them and use your own wisdom, and you insist that your child be given intellectual training first and foremost, your child will almost certainly do well. I'm actually jealous that my sister got my nephew instead of me. :) And Melanie is right. False diagnosis of DS is not that uncommon. If you have an abortion, you may well be aborting a normal, healthy child. Not only that, but having an abortion could make you prone to having a child prematurely in the future, and that could cause that child to have cerebral palsy! If, on the other hand, you have a baby with DS, and you can't cope, there's a waiting list of interested prospective adoptive parents. So try not to worry. Enjoy your pregnancy. Your doctor doesn't have a right to rob you of your joy. Regardless of what happens, we'll be praying for you, and we know that God will sustain you. Your baby is depending on you for your protection, and you are the only person who can protect your baby. I urge you to protect your baby. Hugs, Pat [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Jenni [ Edit | View ] Date Posted: 07:25:44 01/10/04 Sat Hi, I remember when I was pregnant, my doc asked me if I wanted to get any tests done for DS or anything else. I asked her about the DS test and she said that it, as well as many other tests...including Amino (which can be risky for the fetus and sometimes mom), often have false positives. She told me how she was told that she was going to have a baby with DS, when she was younger... and she didn't even have a babyshower or anything like that. However, her child was born without it, a huge suprise to everyone. I actually used to work with disabled children and actually think that the people with DS and Palsey are the luckist of all. As children and even adults, they are sheltered from all the stressful junk in life. The always contain a sweet naiveness. Next time you notice a disabled child, instead of focusing on her differences, look at her demeanor. I think you will find these children always smiling and giggling...they have the positive outlook on life that we "normal" people often spend a life-time looking for. Who's to say that we are the "normal" ones anyways? My life is anything but.... Peace, Jenni [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 21:48:32 01/11/04 Sun Hi Aimee, Wow! I can only imagine that pins and needles doesn't even begin to describe what you are going through right now. When is your amnio -- have you had it yet, and if so, when are you expecting the results? The most productive thing you can do right now, in this waiting time is to take a look at the resources we've been offering. Every prenatal diagnosis is an absolute shock -- it always requires you to reorient yourself -- but none of us are really prepared to do that. That's why it's so good that you are turning to other people for help. Now what you really should do is get in touch with parents. Here is a good start -- and check the resources page for more places to look (as well as those already mentioned by the gals who posted): http://www.benotafraid.net/story.asp?id=24 I'll be anxious to hear what your amnio says!! Hang in there! Sincerely, Monica [ Post a Reply to This Message ]