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Subject: Re: Cystic Hygroma's Author: Melanie [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 14:31:20 02/24/04 Tue In reply to: Sarah 's message, "Re: Cystic Hygroma's" on 10:46:24 02/23/04 Mon 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 [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> [> [> 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