I am new - my baby has a congenital heart block, surgery first day of his life

Daniela - posted on 06/19/2009 ( 2 moms have responded )

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Hello everybody,



I am glad to find this group. I was reding the other groups - healthy children and it made me feel even worse about my situation. I think only parents who went through this can undrstand. My baby boy was diagnosed with congenital heart block when I was 20 weeks pregnant (his heart rate was very low around 50 insted of 120 and more as it should have been). It was the most stresful pregnancy, with this condition the chance of him dying sudennly was about 50%. Then when I was 35 weeks we were told that his heart is failing and he was delivered and immidiatly rushed to surgery and recived a pacemaker. I saw him only next day and I will never frget how his face looked. Not like a newborn, not like a baby, he looked like somebody traumatized, he was so scared when I picked him up, he was cto be hurt again. He is doing relativly well, but he had postsurgery complications and needs an oxygen still. I am fiting to be more optimistic about his prognosis, but I am also incredibly sad that thi s happend to him. He will need repeted surgeries to replace the pacemaker and replace the leads in his heart (open heart surgery again). How do you ladies cope? I feel like I have postraumatic stress disorder. Nobody around me can really relate, everybody has healthy babies.

2 Comments

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Sarah - posted on 09/25/2009

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35

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I didn't find out my son my son had a heart defect until after he was born. And my husband not the doctors told me. I was devistated. I had to take it one day (some times moment by moment) at a time. I held on by keeping busy (reading, sewing, coloring, ect.) and prayed alot. I spent every day as long as I could with him at the hospital, doing the things I mentioned above, and I asked the doctors and nurses lots of questions. I wanted to help him any way that I could. When he was to finally come home, I made up a daily chart that I wrote everything he did and the time it was done (feedings, changings, sleeping, meds., ect.), so that I wouldn't forget anything as I was so exausted. I didn't take time for myself or my husband (and looking back I would have been better for him, my husband and myself ~ physically, and mentally if I had) as he was the only thing I focused on. I worried about everything. Not a good thing to do it will make you physically sick. Over the first year I was a wreck. As he got better I learned to adjust and have learned not to stress over it so much. I enjoy every moment I have with him. Now that he is doing better, I can treat him as a "normal" child. this is not an easy task to do. Copping come to you with time. You just have to hang in there. I had a teacher (who lost her husband when her children were young) that said she had to fake it until she was able to make it (though the day). Not sure if I have been helpful or not. If you ever need to talk let me know. I will try to bee there for you any way that I can. God Bless!

Sarah - posted on 09/25/2009

66

35

6

I didn't find out my son my son had a heart defect until after he was born. And my husband not the doctors told me. I was devistated. I had to take it one day (some times moment by moment) at a time. I held on by keeping busy (reading, sewing, coloring, ect.) and prayed alot. I spent every day as long as I could with him at the hospital, doing the things I mentioned above, and I asked the doctors and nurses lots of questions. I wanted to help him any way that I could. When he was to finally come home, I made up a daily chart that I wrote everything he did and the time it was done (feedings, changings, sleeping, meds., ect.), so that I wouldn't forget anything as I was so exausted. I didn't take time for myself or my husband (and looking back I would have been better for him, my husband and myself ~ physically, and mentally if I had) as he was the only thing I focused on. I worried about everything. Not a good thing to do it will make you physically sick. Over the first year I was a wreck. As he got better I learned to adjust and have learned not to stress over it so much. I enjoy every moment I have with him. Now that he is doing better, I can treat him as a "normal" child. this is not an easy task to do. Copping come to you with time. You just have to hang in there. I had a teacher (who lost her husband when her children were young) that said she had to fake it until she was able to make it (though the day). Not sure if I have been helpful or not. If you ever need to talk let me know. I will try to bee there for you any way that I can. God Bless!

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