Re: Hydrops -- Poor Prenatal Diagnosis-Advice And Support

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Subject:

Re: Hydrops

Author:
Shellie

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Date Posted: 10:56:43 01/17/04 Sat
In reply to: Laurie 's message, "Hydrops" on 16:00:24 01/16/04 Fri

Dear Laurie,

My heart goes out to you as you are dealing with this terrifying situation. Hearing that your baby has a condition that could be fatal can make you feel so helpless. Hydrops is a serious condition, but some babies do live. That means there is HOPE! I will pray for a postive outcome for your little one. Ask your doctor a lot of questions. Be sure to let them know that you want to know about all the treatment options, because some doctors seem to want to throw in the towel when they discover a poor diagnosis. So make it clear to them that you want to know what treatment procedures are available.

Ask your doctors about these procedures:

Fetal Thoracentesis (removel of fluid in chest with needles)

Thoracoamniotic Shunting (placing shunts into chest to consistantly drain the fluid)

CLICK HERE FOR INFO ON HYDROPS

Please stick around and post as often as you'd like. It may be helpful to express your feelings and feel supported by other mothers who understand what you're going through.

Thoughts and prayers~

Shellie

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Replies:

[> Subject: Re: Hydrops

Author:
Monica
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Date Posted: 15:00:29 01/19/04 Mon

Hi Laurie,

I'm so sorry that your baby has hydrops. I've read plenty of cases of hydrops w/o hygroma, so who knows, really what the future holds.

I don't know anything about treatments -- there is just not a lot of positive info out there -- which is sad b/c I have seen on various message boards over the last couple of years that there really are some children who survive despite the grim prognosis. You just don't hear about it much.

There is a site out there that discussed a family's experience with this -- they did lose their baby, but it has some good info:
http://pages.ivillage.com/mallvin/id1.html

The thing to keep in mind is that for whatever reasons, some do survive.

Here is a story of a girl with hydrops in utero who lived -- she has down syndrome (which is probably why she had the hydrops) -- and some other complex medical issues:

http://www.benotafraid.net/story.asp?id=6

and another story, a little boy (also with DS):

http://clarionherald.org/20021106/art003.htm

Please keep us updated on your situation so we can help you along!

Hoping for the best for you and baby.

PS -- good, I see Shellie gave you some treatment info.
Sincerely, Monica

[> [> Subject: Re: Hydrops
Author: Laurie [ Edit \| View ]	Date Posted: 08:11:45 01/21/04 Wed Thank you for responding to my message. I really appreciate it. Today is the big day we find out more about what is happening with us. They believe that the cause is from the parvovirus, but we will know for sure today. I will keep you all posted, thank you sooooo much Laurie