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Subject: Re: cystic hygroma-hydrops any help please!! Author: Victor v [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 18:35:13 03/10/04 Wed In reply to: Laura Walla 's message, "Re: cystic hygroma-hydrops any help please!!" on 13:40:24 03/07/03 Fri HI everyone , i have a daugter wiht this problem (cystic hygroma)in her neck and I'm desperate if some one can send me information about pediatric doctor's around el paso tx who's treat this desease .please i need help. V.V. [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Jess huppatz [ Edit | View ] Date Posted: 04:20:47 10/20/06 Fri Hi everyone, I am currently 16weeks+5days pregnant and have recently been told via an ultrasound and amnio that my child has turners syndrome as well as having a cystic hygroma on her neck that is relatively large. I've also been told that I have low amniotic fluid. Can anyone please provide me with any information in regards to success rate of survival, or whether large cystic hygromas can shrink. We have been told to likelihood of our daughter surviving is low and to let nature takes its course. Please help. Jess [ Post a Reply to This Message ]

[> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 10:22:55 10/20/06 Fri Yes, hygromas can shrink, so don't give up hope! Here is just one example: http://www.benotafraid.net/story.asp?id=82 . The thing to keep in mind is that you aren't going to be able to do this with stats because the stats are extremely grim. What does that mean? It means that while many people who carried a baby with hygroma and TS lost their baby, it also means that virtually everyone who did not lose their baby with cystic hygroma and TS were told that they would. In other words, the numbers will not offer you the hope you are looking for - what will is the very real fact that there are survivors, despite what everyone expected! Cohen (http://www.benotafraid.net/story.asp?id=102 ) had a prominent hygroma as early as 12 weeks. He survived. (His mother reports that he has cerebral palsy, something that was not known until he was several months old - but that he, and importantly, they, are doing very well.) Jess, what kind of help have you been offered so far? Has the dr been able to give you any first hand stories of survival or is this the first time you are encountering the possibility? [ Post a Reply to This Message ]

[> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: jess [ Edit | View ] Date Posted: 22:52:36 10/20/06 Fri Hi Monica, The Dr has given my husband and I some counselling and some advice. We are about to see the neonatalogist and the genetics Dr. I have read many articles and stories in the last few days and I still haven't given up hope. My husband and I are letting nature takes its course. If my daughter is to remain here on earth she will. I would like to thank you for your support. Jess [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Monica [ Edit | View ] Date Posted: 12:13:14 10/21/06 Sat I hope that your baby is one of the survivors, Jess! Please know that you will be in my prayers (I'm sure everyone who reads here will be praying for your baby). [ Post a Reply to This Message ]

[> [> [> [> [> [> Subject: Re: cystic hygroma-hydrops any help please!! Author: Michele [ Edit | View ] Date Posted: 23:22:34 10/21/06 Sat Jess, I just want you to know that I'm praying for you, your husband, and your precious baby. We are here for you anytime. Michele [ Post a Reply to This Message ]