Pediatric Heart Expert Forum
TOF With Absent Main Pulmonary Artery
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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 With Absent Main Pulmonary Artery

Hi Doctor

My name is Aniruddha and i am from India; i have my baby 4 yrs old who has been diagnosed with TOF and absent of Main Pulmonary atresia ; his congenital defect was came to known us when he was 4 months old.The blood flow from heart to lungs is through tiny MAPCa because of which there is very little blood flow to left as well as right lung.I have shown him to very well known Children's hospitals in Bangalore (Narayan Hrudayalaya)as well as hyderabad(Apollo Hospital) where doctor's rejected him to operate as they said the baby has complext heart and lung problem which makes surgery (Unifocalization) a risky one.
At this age now Baby has been without any surgical treatment and his growth is tool slow.He can't walk now and his health is too weak.he is breathless all the time and has saturation(O2 level) around 40-50.Just wanted to know is there any technological advancements in US where there is treatment for these type of kids.
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Dear Aniruddha,

Tetralogy of Fallot with pulmonary atresia is a difficult cardiac defect to treat, especially when the branch pulmonary arteries are so small and there are multiple aorto-pulmonary collateral arteries (MAPCAs).  Unfortunately, at this age after having gone for so long like this, your son’s heart defect is not reparable.  He has gone too long without unifocalization of his pulmonary arteries and collaterals, which we like to achieve in infancy.  At this point, I am sorry to say, I do not believe that he would likely survive any kind of surgical intervention.
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