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Subject: Hydrops Author: Laurie [ Next Thread | Previous Thread | Next Message | Previous Message ] Date Posted: 16:00:24 01/16/04 Fri Hi, my name is laurie and I just found out yesterday by ultrasound that my baby has hydrops. Where I live, nothing is known about it. Noone has any idea what causes it or what the treatments are. I am really confused, scared, and feel alone. I don't know what to do. I had some blood work done today, but won't know the results until Wednesday. I am in my 20th week. I wasn't informed of they cystic-hygoma and I'm wondering if this is another blow I may receive on Wednesday. What has anyone done for treatment? Is there treatment? I read about Umbilical Transfusions. Has anyone done this? Please, I am really in the need for some help and advice. Laurie P.S. To all you other moms with the same or similar conditions, I totally understand the fear and emotions that accompany this. I will be checking this site often. Thank you again for taking the time to read this. [ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

[> Subject: Re: Hydrops Author: Shellie [ Edit | View ] Date Posted: 10:56:43 01/17/04 Sat 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

[> Subject: Re: Hydrops Author: Monica [ Edit | View ] 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

[> Subject: Re: Hydrops Author: joanne [ Edit | View ] Date Posted: 06:30:28 01/20/04 Tue hi honey,at eight weeks i was told my baby had a large hygroma on the back of its neck,there were hydrops which appeared to be spreading down the arms also. luckily we got a fabulous consultant now, but only cause i appealed the one we had before advised us to terminate the pregnancy!!!!any way its been an aweful time really i never gave up hope,and before christmas came the news the hygroma had gone and there was no evidence of hydrops.i couldnt believe it no explaination was offered we were simply told in some cases this happens. im 25 weeks pregnant now and despite the fact our baby could still have a genetic abnormality things are looking much better.im sending a big hug cause i guess you could do with it...my advise is....demand a second opinion and get your consultant to explain all the ins and outs.stay positive and dont give up hope xxxxx

[> [> Subject: Re: Hydrops Author: Laurie [ Edit | View ] Date Posted: 08:13:38 01/21/04 Wed Thank you very much for your response and congratulations on your baby's magnificant recovery. I guess it is a long road we will have to travel, but I'm not giving up hope. I appreciate your information and story as this has given me even more hope. I will keep you all posted. Laurie

[> [> Subject: Re: Hydrops Author: Laurie [ Edit | View ] Date Posted: 04:09:24 02/01/04 Sun Well everyone sorry for the long delay in writing. I went last Friday to Ottawa and saw the dr's there. Our baby was diagnosed with down syndrome and was determined a girl. She has many complications including the hydrops. The hydrops are so bad in the chest, the lungs are unable to grow. Her heart has many defects as well. I came home Wednesday and on Friday went to get an echocardiogram of the baby's heart. It was determined then that she has passed away. I've now been in labour since Saturday morning around 7am and still haven't been able to deliver her. I wish the rest of you the best of luck and I hope this tragedy doesn't happen to anyone else. Take care and thank you for your help. Laurie

[> [> [> Subject: Re: Hydrops Author: Terri [ Edit | View ] Date Posted: 10:32:25 10/18/04 Mon Laurie, I know this post is an old one so I hope you get to read this. I too had a baby with Hydrops and Down Syndrome. She was born on October 14,2004 and died on October 15, 2004. She had many problems directiy related to the Hydrops and Down Syndrome. She was on every life support machine imaginable and yet still could not get any better. Her death was a pain I can't even describe but somehow I know that you would understand it. Her life was very short and full of pain. During the last day of her life we were given the option to take her off kife support and hold her until she passed. I am so glad that we were able to do that. I got to feel her heart beat and I will never forget how she smelled and how soft her skin was. I am very sad for your loss but please know there are others that feel your pain. Im Loving Memory of : Emily Grace "Our Little Angel" Terri

[> Subject: Re: Hydrops Author: laurie [ Edit | View ] Date Posted: 08:17:16 01/21/04 Wed I appreciate the responses I have received. I was a little worried as I had lost the link to this site. I was devasted as I felt then I really had noone. Your stories have helped and the information has helped as well. Today I will find out a little more about our case and see if the hydrops were caused by parvovirus after all. I have a pediactric heart specialist keeping a close eye on my baby's heart and so far it is normal. Also, specialists in Ottawa are involved with my case and guiding my doctor as to what to watch for etc. I will ask about the treatment information given by you and make sure I get lots of opinions from different dr's. Thank you again and I will keep you all posted. Take care, Laurie

[> Subject: Laurie, I hope things go well for you today! Author: Shellie [ Edit | View ] Date Posted: 08:57:47 01/21/04 Wed Please let us know how the appointment goes! Feel free to post here as often as you want. Looking forward to hearing from you~ Shellie

[> [> Subject: Re: Laurie, I hope things go well for you today! Author: Monica [ Edit | View ] Date Posted: 17:46:41 01/21/04 Wed HI Laurie, Joanne, Kris, and all who are concerned about hydrops *and* hygroma -- I found a story: http://www.findarticles.com/cf_dls/m1355/19_98/66762769/p1/article.jhtml Hang on to hope!!! Sincerely, Monica

[> Subject: Re: Hydrops Author: Ron Jenson [ Edit | View ] Date Posted: 23:27:46 03/20/05 Sun 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

[> [> Subject: Re: Hydrops- To: Ron Author: Shellie [ Edit | View ] 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 [ Edit | View ] 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 [ Edit | View ] 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 [ Edit | View ] 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