What are the dynamics and barriers of transplants for individuals with congenital heart disease?
Internationally renowned pianist Paul Cardall introduces families who had children with similar complex heart defects like himself. These friends and associates of the pianist had endured countless heart surgeries and the last resort was to receive a heart transplant. Unfortunately, a majority of patients with complex heart defects (CHD) are unable to receive heart transplants.
The question is why don’t sicker congenital cases make it ahead of those with normal anatomy – is it
1) because of the technicalities of the surgery and
2) we need to do more research and development (i.e. they do not have the anatomy for a healthy heart to be placed), or
3) is the fear of bad outcomes messing up the stats (they can do it but take an easier lower risk case over a difficult one), or
4) is it indeed that “the system” works against this and legislative action can resolve this issue?
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Because of the growing adults with congenital heart disease (CHD) it is my belief that:
1) the Cardiovascular systems universities require a semester on CHD and
2) Hospital Management degrees also require a semester on all congenital defects, particularly CHD now that children are surviving and go into an adult hospital
3) Legislation and medical malpractice insurance policies be changed so medical personnel operating on high risk patients with pre-existing abnormalities who need transplants are not subject to the same “mature rate” as those working with patients who have normal anatomy, particularly patients.
4) With the changes mentioned in #3 legislation enact laws so organ donor societies don’t discriminate against high risk patients because they have a pre-existing abnormality that requires a transplant for survival. In other words, do not waste all the time and energy medical science has spent saving CHD patients.