Pediatric Heart Expert Forum
TOF w/absent pulmonary valve & 22q13.3
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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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?
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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.
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Marie M Gleason, M.D.Blank
The Children’s Hospital of Philadelphia
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Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
Philadelphia, PA
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