Life expectancy for TOF with absent pulmonary valve syndrome after repair
My son is now an active 4 1/2 y/o with TOF, absent pulmonary valve syndrome. He had his repair at 5 weeks of age and had a difficult recovery. He was on/off the ventilator for multiple pneumothorax, had multiple chest tubes, develped chylothorax, etc. His left pulmonary artery was coming off of his aorta and his right pulmonary artery was huge. The right pulmonary artery was plicated and the left attached to the main pulmonary artery,VSD closed and a monocusp valve placed. After having said all that, my question is...what is his probable life expectancy? I know anything can happen, but the only information I can find on it is looking at infants before/immediately after repair. Are there any studies/information out there about these kids down the road?? As I said, my son is doing ok from a cardiac standpoint, we are just doing echos etc.. to watch and see when he will need a valve replacement. Not a day goes by that I don't think about this, just wondering what your opinion is and/or what your experience is. Thank you so much for your time. I really appreciate it.
I don't know exactly what the prognosis on your son would be; however there are some things that I can tell you: A pediatric cardiologist will tell you if there is not a normal life expectancy for your child; they will tell you that right away, because those children generally need to have their daily activities restricted. One in every one hundred children born are born with some type of heart defect. My daughter's Godfather is a pediatric cardiologist and he once told me that he can cure 95% of the children he sees; only 5% he cannot help without transplantation. When it comes down to it, that's a pretty small number. It doesn't sound, from what you have written, that your son will not live a normal life. What does his doctor (cardiologist) say about this? Have you discussed your fears with him? Believe me, those doctors have heard more fears from parents than most! (One of my best friends is also a pediatric cardiologist as well; he comes up with some real stories!! LOLs! I keep telling him he needs to write a book and he keeps after me to do the same!!) Talk to your son's doctor about how you feel. The worse thing that you can do is to turn your son into a 'cardiac cripple' which can be difficult to do for any parent, especially a young mother. Keep in mind that the long term affects from overprotecting any child can be devastating in the long run. Take care!
Thank you so much for your reply. It's gives some comfort to know your daughter's Godfather said that he can cure 95% of the children he sees. I know treatment for congenital heart disease has come a long way. We have a new cardiologist and I haven't asked him the life expectancy question yet. My son is usually in the room and I didn't want to ask it in front of him. He is due for his yearly echo, ekg, etc. in june 2010 and I will ask him then. I agree 100% with what you said about turning him into a "cardiac Cripple". It is difficult not to do, but I am trying VERY hard everyday Not to do that. He appears to be a well-adjusted little boy and I let him do pretty much everything the other kids do. He goes to preschool, runs outside, goes swimming, etc.. I did post on the expert forum as well so we'll see what their opinion is. Thanks again for your comments.
Nicole, I really do wish you the best of luck with your little boy. he sounds full of himself and that is the way a little boy should be! If you can wait until June to talk to his new doctor, that's fine, just don't put it off if it stresses you everyday. I used to watch my daughter go off to school and wonder if she was going to live to return home at night and it is a horrible way to have to live. Let him play to his little heart's content; it's the way God intended for him to play. Let us know how he is doing, will you, and always come back on the forum for the support you need Take care.
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