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

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Subject: Re: Hydrops

Author:
Ron Jenson

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Date Posted: 23:27:46 03/20/05 Sun
In reply to: Laurie 's message, "Hydrops" on 16:00:24 01/16/04 Fri

We just found out at 23 weeks that our baby has hydrops, with no known cause, anybody having any information or that know of any support groups please let us know. Thanks

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Replies:

[> [> Subject: Re: Hydrops- To: Ron

Author:
Shellie
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Date Posted: 10:02:29 03/22/05 Tue

Hello Ron,

I'm sorry you've been given a poor diagnosis, I'm sure you're devastated. Hydrops is a pretty serious diagnosis, but I have heard of a positive outcome. I will post again when I have more time to dedicate to the message. I don't know how much you've read through the other posts on this board, but there are many helpful links and info regarding Hydrops.

You, your wife, and your little one are in my prayers.

Shellie

[> [> [> Subject:

Re: Hydrops- To: Ron, read this true story about Hydrops....

Author:
Shellie
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Date Posted: 18:25:36 03/22/05 Tue

Hi Ron,

Please do read this Hydrops story:

http://www.benotafraid.net/story.asp?id=82

Have your doctors discussed treatment options?

Will you do me a favor? Will you continue to post here and update us on your little one? I think this can be a great service to others who may stumble on this message board in the future. I hope and PRAY that you have a positive outcome.

Sincerely,

Shellie

[> [> Subject: Re: Hydrops

Author:
Monica
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Date Posted: 21:04:18 03/22/05 Tue

Hi Ron,

I was wondering if you could tell a little more. 23 wks hydrops . . . was it not there before or have you not had an ultrasound until recently and just weren't aware of the hydrops? I have read a case about a baby with later term hydrops that was successfully treated with dijoxin in utero -- but I can't remember if the baby had underlying heart defects, or not. At any rate, I'll look around for that citation and try to post back asap!

Sincerely, Monica

[> [> Subject: Re: Hydrops

Author:
Ron
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Date Posted: 14:36:05 03/24/05 Thu

Hi Monica, The baby was diagnosed with increased nucle sp? thickness during the 1st trimester ultrasound. The doctors gave it a 1 in 3 for downs. We underwent a CVS and ruled out chromosone disorders, then the doctor said it could be an increase risk of heart problems. After the 2nd trimester ultrasound they wanted to do a cardiac echo test which they did at 21 weeks. They noticed fluid around the heart at that time and wanted us to come back for another ultrasound in 2 weeks. That is when they found fluid around the lungs, abdomen and edema in the skin. Our perinatal specialist has done multiple tests, including a blood draw from the umbilical cord to check for anemia, liver function gas levels in the blood stream. All tests so far have revealed no known cause for the hydrops and the baby so far is doing well except for the fluid build up which is becoming noticeably worse with each ultrasound, especially in the abdomen. We are doing another ultrasound on Tuesday which will be the 25th week and go from there. I hope this gives you a little of the history of what has happened and thank you for your thoughts.

Ron