There are more than a million adults living with congenital heart disease.
A little over a month ago, the Adult Congenital Heart Association gathered for a conference in L.A. that brought together a majority of physicians who specialize in caring for potential lifelong survivors in the field of congenital heart disease.
I was fortunate to attend with my wife and meet many of these doctors along with several adult survivors who like me are enjoying a good life despite its many challenges.
I walked away from the conference believing adults who have survived with CHD and the doctors who care for them are clearing a path that will enable even more children born with abnormal hearts to grow up and enjoy life. This requires, however, patients never stop seeing a congenital cardiologist just as you would not stop seeing your dentist to avoid cavities.
The average cardiologists, even if they have a little bit of experience with birth defects, usually do not understand how to treat deformed hearts.
Specialists or congenital cardiologist understand the anatomy and know how to treat symptoms and find corrective surgical procedures. Many patients with complicated heart problems often can develop long term complications associated with their particular heart problem. For example, liver failure or arrhythmias. Only adult congenital cardiologist know when to start looking for early signs as well as provide up and coming medical therapies and treatments for these adults before it becomes too late.
Above all, "if your doctor can't draw your defect on a napkin or piece of paper on the spot, and has less than 20 patients with CHD, then you need to find a new doctor," said Daniel Murphy, Jr. MD from Stanford.
I discussed the ACHA conference and adult care on the CHD Show with Jim Ferretti:
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