TOF w/absent pulmonary valve & 22q13.3

My grandson is 4 years old now. He's had 2 valve replacements, g-tube fed, had fundoplication procedure to aspiration issues & other respiratory issues/repairs along the way. He's now on a heart monitor because his EEG/EKG showed some abnormalites. We're told his value has showing signs of leakage. I can't seem to find much info on what to watch for or what to expect. I know he'll need another valve replacement. We're scared. Know nothing about life expectancy or what his chances are with this upcoming surgery. He's autistic & lovable (which I'm told is rare) he doesn't speak & won't know or understand what he's soon to experience. So I'm searching for resources to educate us so we can try to understand what we're dealing with & to better understand what to expect. I'd like to know life expectancy stats but can't find any case details that fit my grandson's situation. Can u help?

[Jeffrey R Boris, M.D.]

Dear Ma Valdez,

I don't have enough information from what you are telling me to be able to give you any answers to your questions.  I don't know his heart defect, and am not able to review his studies.  I recommend that you discuss this specifically with your grandson's pediatric cardiologist.  If there is concern about the information, or there is a feeling that you are not getting adequate information, it is certainly reasonable to obtain an second opinion.