My 18 yr old son is having partial av canal defect.Disease was diagnosed at one year age, and doctors advised for surgery.But due to poor physical growth I could"nt take decision. He is 24kg &133 cms at 18 yr age.His recent echo evaluation is done in Escorts Heart Institute New Delhi, and according to doctors, lungs pressure is still normal, and heart is still operable.Further I want to add that my elder son was also having the same partial av canal defect, and was operated in All India Medical Institute & Research Center, New Delhi in 1990 at the age of 3year.He could"nt survive.Post operation in ICU, he expired.Thats why I am hesitating for surgery.Kindly guide me.
It sounds like your 18 year old son is severely debilatated despite having normal lung artery pressure. I certainly do not have enough information to advise you about this; because normal children with partial AV canal defects and normal lung artery pressure usually grow normally. If you had another child with the same condition, there may be some underlying genetic problem that is inherited in your family, that leads to the poor growth and could influence survival. The best recommendation that I can give you is to ask the doctors if they think that if the surgery is done this late in life, how is it going to change your son's condition? do they think that he is in heart failure? if the surgery corrects the heart failure, will he be able to grow a bit and gain some weight? What are the odds of him surviving in his current debilitated state? What do they think his life expectancy would be with and without surgery? they know your child's overall medical condition the best and could answer some of these questions. Only then can you make an intellgent decision about moving forward with surgery. However, I do understand their concern: if someone has a significant congenital heart defect and is lucky enough to have normal lung artery pressure after many years, then surgery is usually advised. But you still have to look at the total picture in each patient's case.
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