The Max Robbin Fund at Columbia University Medical Center
the special care of the adult patient who was born with a heart defect.
There are now more adults living with a childhood heart repair then there are children with these defects; some estimates are 1.5 million adults in this category vs. 1 million children. This wonderful longevity is due to great success in surgery on young hearts, advances in interventional procedures for children, and better understanding of these heart conditions on the part of pediatric cardiologists.
But people with early repairs sometimes have continuing problems, and not just with their hearts. Unfortunately, it is not always "fix it and forget it."|
Only in the spring of 2013 did the American Boards of Pediatrics and Internal Medicine approve a sub-specialty in Adult Congenital care. Some countries are far ahead of us. Here, the transition from pediatric cardiology to adult congenital cardiology can be confusing, inefficient, or non-existent. Max navigated these treacherous waters largely on his own, and his parents started the Fund to make it easier for others.
to endow a Teenage Congenital Cardiology Clinic, which will ease the transition from pediatric to adult care for these patients. Long-term health, nutrition, moving away to college, sports, romance, and choices in future medical care are all topics of concern to young adults that have a special intensity for teenage heart patients.
The clinic would have a dedicated Nurse Practitioner to be the patient's guide and advocate during this stressful time; someone who had watched the young person grow up and knows the teenager well.
Encouraging the special care of the adult patient born with a heart defect
The Max Robbin Fund for Adult Congenital Heart Disease.||
||Columbia University Medical Center