My daughter is 9 yrs old born with a metabolic disorder and diagnosed with dilated cardiomyopathy at age 3. Recently diagnosed with CHF, 25% heart function, enlarged heart & ventricular tachycardia. Doctors managed to stabilize her and three weeks later (today) she was discharged from Children's hospital. Cardiologists are doubtful she will have long to live; they seem to almost give up on her case. She is registered for palliative services as she does not qualify for heart transplant and they don't recommend surgery or heart devices; they just want her to go home to live what little life she has left. Everything that is happening is so surreal and I don't want to just accept that we may lose our daughter any day soon. I guess I just want to hear a positive story that is similar to hers, so we can gain strength from others. Thanks.
When my daughter was a child, the doctors told us to take her home and let her live what childhood she had left; I think she was about 8-9. They told me to spoil her......I never did and was glad for it. She had a transplant at 22!!. She is now 33 and it hasn't been an easy road. her EF% as I write is now 15%, down from 42% on her last echo. I know what it is like to have doctors seem to give up on a child. Don't you EVER stop fighting for her. One doctor told me that I was almost impossible for him to give up on my daughter because of how hard i was fighting for her. If you ever want to talk, let me know through leaving me a message on my page. take care!
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