Re: Cystic Hygroma's -- Poor Prenatal Diagnosis-Advice And Support

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Subject: Re: Cystic Hygroma's

Author:
Sarah Clarke

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Date Posted: 13:42:59 03/02/04 Tue
In reply to: joanne 's message, "Re: Cystic Hygroma's" on 06:40:09 01/20/04 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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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

[> [> [> 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

[> [> [> 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.