Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Hi, everyone! I'm a new member... and an old member ... I was signed on to the list when my son was much younger, and have since returned! My son is now 9 years old. When he was between the ages of birth to about 3 years, he had a total of three open-heart surgeries. Since then, he has been entirely dependent upon a pacemaker, but we've had no other heart problems. Suddenly, we are having them again. His heart muscle is weakening pretty significantly (which the pacer can't help obviously) and they have recently put him back on heart meds. We've got a cardiac cath coming up, and already know that the pacer battery has to be replaced AGAIN. I'm getting really scared this time round. He is so much more tired than he's ever been, getting out of breath, and even clutching his heart from time to time. I know that his age and physical growth could be cause for these problems, and I know how resilient children are, but I can't help but wonder how much his heart will take. I'm just wondering if there is anyone else out there in the same boat. And as much as I hate to ask: Does anyone know the actual life expectancy for a CHARGE child with such serious heart complications? Of course the doctors won't say, and I know each child is different, but I seem to recall over the years hearing that many CHARGE children in my son's situation were lost at or around this age. And that, of course, is scary. Any thoughts? I'd love to talk ... Thanks - Rosie -- lie N. Parrish, MEd Program Coordinator Auditory-Oral Birth-Kindergarten Teacher Licensure Program The University of North Carolina at Greensboro PHONE: FAX: EMAIL: rnparris@... Quote Link to comment Share on other sites More sharing options...
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