Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Rosie, I don't know any facts for you, but am sending prayers your way. Hopefully the cath will find a treatable problem. Kim L Heart Trouble ?? 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@... Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 HI ROSIE, IM SORRY ABOUT YOUR SITUAION. I DONT KNOW ANY INFORMATION, BUT I TOO WILL PARY FOR YOUR SON AND FAMILY WITH ALL OF MY HEART. OUR SON HAS ALSO BEEN ILL TO THE POINT WHERE WE THOUGHT WE'D LOSE HIM AND ITS THE SCARIEST TING EVER...ESPECIALLY WHEN THE MEDICAL PROFESSIONALS SEEM AT A LOSS ABOUT HOW TO HELP. GOD BLESS AND I'M HERE IS YOU NEED AN EAR.! > > > Date: 2004/11/18 Thu PM 02:27:03 EST > To: <CHARGE > > Subject: RE: Heart Trouble ?? > > > Rosie, > > I don't know any facts for you, but am sending prayers your way. Hopefully > the cath will find a treatable problem. > > Kim L > > Heart Trouble ?? > > 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@... > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 HI ROSIE, IM SORRY ABOUT YOUR SITUAION. I DONT KNOW ANY INFORMATION, BUT I TOO WILL PARY FOR YOUR SON AND FAMILY WITH ALL OF MY HEART. OUR SON HAS ALSO BEEN ILL TO THE POINT WHERE WE THOUGHT WE'D LOSE HIM AND ITS THE SCARIEST TING EVER...ESPECIALLY WHEN THE MEDICAL PROFESSIONALS SEEM AT A LOSS ABOUT HOW TO HELP. GOD BLESS AND I'M HERE IS YOU NEED AN EAR.! > > > Date: 2004/11/18 Thu PM 02:27:03 EST > To: <CHARGE > > Subject: RE: Heart Trouble ?? > > > Rosie, > > I don't know any facts for you, but am sending prayers your way. Hopefully > the cath will find a treatable problem. > > Kim L > > Heart Trouble ?? > > 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@... > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Thanks everyone for your supportive words AND your prayers regarding our newest heart problems with my son. My son and daughter and I pray every night for children all over the world who suffer for whatever reason, and in my heart I pray for the families of these children who are struggling to " fit in " in more ways than one. Michele, you mentioned a heart transplant, and yes he would be a candidate. I asked about this several years ago (jokingly) and they answered " yes " without laughing. That's when I really came to understand how fragile his heart is. At the time, they said that it would be " riskier in the long-run. " But the topic might very well come up again. As you said, it would be better than the alternative. Blessings to all of you! (And a beer or chocolate if you need it!) Rosie - Mom to Neal, 9 CHARGE, and -Marie, 3 CHARGELESS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Rose- If his heart really can't recover from this weakening, would he be a transplant candidate? I know it's a scary option, but so is the alternative. I don't know the answers to your questions, but I welcome you back and feel for your struggle. Michele W mom to Aubrie CHaRgE 6 yrs and 13 yrs wife to DJ rjnparrish@... wrote: > 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@... > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Rosie- I admire your strength and humor in the face of these challenges. Michele W Aubrie's mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Rosie, My gosh... sending hugs your way!! Mark > 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@u... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Rosie, You and your son are in my prayers. Meredith Fowle > > 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@u... Quote Link to comment Share on other sites More sharing options...
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