Saturday, January 23, 2010

Is this really encouraging?

So, I read this in an article from the and I'm wondering how good I should feel about it.

One example: heart transplant surgery, performed at All Children's around 15 times this year. As with other advances in children's care, the long-term consequences of early cardiac intervention are still unfolding.
For example, hypoplastic left heart syndrome, a birth defect that once resulted in death, for a number of years has been addressed with multiple surgeries. These youngsters now are reaching adulthood, and as their reconstructed hearts grow, they often require ongoing specialized care. So it's not uncommon for these adults to go back to a children's hospital, where the cardiac specialists are most familiar with their condition.
"There's nobody alive today that had open-heart surgery for congenital heart disease 80 years ago," said Dr. Michael Epstein, a pediatric cardiologist and senior vice president for medical affairs at All Children's.
"If somebody has a baby today with a heart defect and they ask the question: 'Will my baby lead a full life?" he added, "the answer is, we don't know."
Which is far more encouraging than the dire reply parents got decades ago.
I mean, obviously, I'm glad that Bean came along now and not 80 years ago, but the "we don't know" part of that answer isn't exactly a resounding vote of confidence.  But, as one of our cardiologists told us, medical understanding and technology and medication is advancing quickly and by the time Bean becomes an adult, she may not have to have biopsies to figure out if she is in rejection.  She may not have to have a transplant to fix a failing heart.  She may not have to take medications to keep her body from rejecting her heart.  But, we just don't know at this point.  We will always have trepidation about Bean's health in the long-term, but at this point, I am hopeful.  I am encouraged.  I have met families online and at the RMH and at clinic whose children had transplants years ago, and they are living healthy, happy lives.  

So, even though the article doesn't portray the promise that modern medicine offers to families like ours with much enthusiasm, I am encouraged.  There are obviously points of despair, when we hear of another child (or adult) lost to a heart condition.  But, there are also many points of exuberance, when we hear of another child who is able to be saved through medication or surgery.  I am also encouraged by the amazing people I have met because of Bean's condition and I am inspired by their strength and dedication.  I hope that I can be a source of strength and inspiration to others.  I realize that we will never be able to rid ourselves of heart defects, but I hope that through raising awareness and increasing funding for research and treatment, we can increase the points of exuberance and greatly decrease the points of despair.

1 comment:

  1. And I think the most interesting part about this is that the doc's question is one that we ALL should ask ourselves...because really, do we know if we will live a full life? And a full life is so much more than 80 years. Just like you said, it's living with what you are given--and I think you, Jason, and Bean have been given the greatest opportunity in a lifetime. :)


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