Your Choice (My Answer)

Yesterday I asked Funky Heart! readers the question Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? To make it a little bit more difficult I added a stipulation: Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

The question generated a lot of debate and discussion (as I hoped it would). But what would I choose to do? The answer might surprise you: I’d choose to prevent Congenital Heart Defects.

Preventing all future heart defects would isolate those of us who already have them… the need for Pediatric Cardiologists would drop as would the need for surgeons with CHD repair skills. You can assume there would be the need for a number of surgeons as CHDers could easily need heart operations later in life, but perhaps not as many as before. The number of Cardiologists would also decline, slowly – there would be a need to serve the current number of patients but that would drop as the patients begin to age and no new cases occur.

Older Heart Warriors would have to increase their efforts to inform and educate younger patients and their families. Not being boastful, but this would be the perfect job for an organization that I am a member of, the Adult Congenital Heart Association (ACHA). We’re already working toward a similar goal: adolescents with a heart defect tend to fall away from good cardiac care as they reach adulthood. They no longer visit their Pediatric Cardiologist; nor have they found an Adult Congenital Cardiologist. A good percentage of them may not even realize that they need an Adult Congenital Cardiologist.

The ACHA is working to prevent this from happening, to makes sure CHDers get good care all of their lives. Currently the Bethesda 32¬† report outlines care guidelines for the Adult Congenital Heart Defect patient and the ACHA’s Vision 2020 Project is a program designed to provide a seamless transition path – from Pediatric Cardiologist to well-trained, competent Adult Congenital Care Cardiologist without a break in care.(Bethesda 32 may be a name you are not familiar with. Every year, experts from the American College of Cardiology meet in Bethesda, Maryland to devise proper care guidelines for a segment of cardiology. The 32nd time they met (the year 2000), they devised guidelines for the care of adults born with a Congenital Heart Defect. You may not be familiar with the name, but the Bethesda 32 Report is very important to the CHD Community. You can read a good summary by CLICKING HERE.)

In the fictitious world we’ve created – one in which all new CHDs can be prevented – older Heart Warriors would have to step forward. We’re the voice of experience, we’ve literally been there and done that. And in this brave new world, we’re a lot more important. Now, we’re going to have to be teachers – teaching the younger generation how to take care of themselves, what to do and what to avoid. And we’re going to have to help each other out, too… the number of Adult Congenital Cardiologists will also begin to drop. After all, in this world where CHDs can be prevented, why specialize in a field that in time, will no longer exist?

This will cause problems, but I believe they can be overcome. We’re all in this fight together, and as Benjamin Franklin said, “We must all hang together or surely we will hang separately.”

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2 Responses to “Your Choice (My Answer)”

  1. Nathan Says:

    Amazing.

  2. Phizz Says:

    That’s a very courageous answer. It does relate to some real choices.

    Do you take the current established treatment with an 80% success rate or the experimental one which is hoped to be 99% successful, in 6 months time, when they have some experience. As an experimental treatment the current odds can’t be known.

    …and as a parent you make that choice for someone else.

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