It was August 21st, 2011, when I said goodbye to my sister, Emily, for the final time. One of the most difficult periods of my life, there were many lessons to be learned. One was that, in spite of all progress humans had made as a society in medicine, there were still many undiscovered causes behind diseases and defects, as well as undiscovered treatments. One of these defects is the one that took my sister’s life: congenital heart defects, which one is born with and is afflicted by for the rest of their lives.
However, we seldom hear about them, let alone hear about any breakthroughs with them.
Congenital heart defects can affect anything in the heart; valves, chambers, arteries. Even the septum of the heart can be affected by these disorders. They can range in severity from requiring a simple surgery to fix to requiring a transplant, whether that be immediately or a few years down the road. The shame of it all is that there are no quick fixes; many of the surgeries are invasive, require weeks (or months) of recuperation, and can often be multi-step procedures.
Unfortunately, not all of this can be enough at times to save the lives of children; the American Heart Association has reported that, among all children who pass due to birth defects, children with heart defects constitute 30-50% of them (though this number is decreasing).
So, where to start? Research. Problem? Not many organizations allocate resources for it. The Children’ Heart Foundation says that only 1% of all money donated to funders of cardiac research goes to pediatric research, the period of life in which the defects must be detected early in order to remedy it in some form. For a defect which occurs at a rate of anywhere from 4 to 10 out of every 1000 births, it is dreadfully under-researched. And that is concerning, given its prevalence and the mortality rates. On top of this, insurance costs are immense for these families; these procedures can cost more than $100,000. Some cost as much as $800,000.
What can we do? Well, we have been bestowed with the means to engender change. Advocate on behalf of these kids. Call government officials. Bring this to the forefront via social media and other channels. Donate to organizations like the CHF mentioned up above. This is an issue that needs more attention. The wonders that could be done with more resources: more treatments, less invasive procedures, higher quality of life for kids born with these defects. So much could change for them and their families. So much could change for children like Emily. I hope to see it in my lifetime.