I read this with tears in my eyes, I have two boys both under the age of two. Both white and born with a rare but treatable congenital heart defect called Tetrology of Fallot. My older boy already had successful corrective heart surgery when he was 4 months old and my 4-month-old goes in for open-heart surgery at the end of this month. S…
I read this with tears in my eyes, I have two boys both under the age of two. Both white and born with a rare but treatable congenital heart defect called Tetrology of Fallot. My older boy already had successful corrective heart surgery when he was 4 months old and my 4-month-old goes in for open-heart surgery at the end of this month. Suffice to say my nerves are a bit raw. They will need follow-up care and potentially more surgery throughout their lives. It breaks my heart to think about my boys on that operating table where the margins are so thin, where a bad outcome is an impossible one to come to terms with.
There isn't a space for this thinking in that field, there can't be, it's too important to too many people. I've met with parents of all backgrounds whose children are born with congenital heart defects and I assure you they care not who is treating their kid, only that it's the best possible care available.
Appreciate the kind words @nancy2001. It's challenging to wrap my head around all of this as the world has changed seemingly so quickly all while I've been focused on the health of my family. One thing I was confident in was the system of care they were being introduced to. The outcome and life expectancy of people born with TOF has improved incredibly, on the backs of great research and component Drs. The facility where the procedure is performed has nearly a 99% survival rate for this procedure, which is incredible given its complexity and length.
My burden is emotional, the overwhelming bulk of the burden falls on the boys, they are the ones that have Drs appointments frequently getting poked and prodded, they are the ones whose hearts are stopped, put on bypass, and brought back to life. The visual when you see them for the first time is something I thought I blocked out, but with my second son's upcoming surgery is burned in my mind. They are so tiny, so helpless and so dependent on this "Christmas tree" of machines over their bed feeding lines and tubes all over their body. The incredible part is that initial horror, if all goes well passes fast.
My last son's surgery was on the morning of the 23rd of December, we were home the 27th, seemingly unbelievable given the sight of him post-op....
All of these words to say, we need the best of the best, there needs to be continued competition and it should be a war of ideas in the pursuit of truth.
With a 99% survival rate for that surgery at your hospital, it sounds like your young sons are receiving the best of the very best care. That's very encouraging, and you should take comfort from that.
I read this with tears in my eyes, I have two boys both under the age of two. Both white and born with a rare but treatable congenital heart defect called Tetrology of Fallot. My older boy already had successful corrective heart surgery when he was 4 months old and my 4-month-old goes in for open-heart surgery at the end of this month. Suffice to say my nerves are a bit raw. They will need follow-up care and potentially more surgery throughout their lives. It breaks my heart to think about my boys on that operating table where the margins are so thin, where a bad outcome is an impossible one to come to terms with.
There isn't a space for this thinking in that field, there can't be, it's too important to too many people. I've met with parents of all backgrounds whose children are born with congenital heart defects and I assure you they care not who is treating their kid, only that it's the best possible care available.
Richie, I hope everything goes well for your son, for both boys.
Appreciate the kind words @nancy2001. It's challenging to wrap my head around all of this as the world has changed seemingly so quickly all while I've been focused on the health of my family. One thing I was confident in was the system of care they were being introduced to. The outcome and life expectancy of people born with TOF has improved incredibly, on the backs of great research and component Drs. The facility where the procedure is performed has nearly a 99% survival rate for this procedure, which is incredible given its complexity and length.
My burden is emotional, the overwhelming bulk of the burden falls on the boys, they are the ones that have Drs appointments frequently getting poked and prodded, they are the ones whose hearts are stopped, put on bypass, and brought back to life. The visual when you see them for the first time is something I thought I blocked out, but with my second son's upcoming surgery is burned in my mind. They are so tiny, so helpless and so dependent on this "Christmas tree" of machines over their bed feeding lines and tubes all over their body. The incredible part is that initial horror, if all goes well passes fast.
My last son's surgery was on the morning of the 23rd of December, we were home the 27th, seemingly unbelievable given the sight of him post-op....
All of these words to say, we need the best of the best, there needs to be continued competition and it should be a war of ideas in the pursuit of truth.
With a 99% survival rate for that surgery at your hospital, it sounds like your young sons are receiving the best of the very best care. That's very encouraging, and you should take comfort from that.