Have you ever come across a scent or a song that transports you to another place and time? Of course, why else would Glee resurrect all the oldies like Don’t Stop Believin‘. What were you doing when that song first came out? This occurrence works both ways – it is not always a fond memory.
A couple of years ago, I went to see the Broadway production of Spring Awakening starring Lea Michele (hence the Glee reference above). The lead character, Moritz, dies and his father goes into an emotional tailspin. His body collapses; his voice goes from silence to shrieking back to silence; he can’t catch his breath. This performance brought me back to the day that Simon died. I could feel the pain and anguish. There is only one person that can make those sounds – a parent that has lost a child.
Recently, that song or scent came in the form of Sarah Murnaghan, the ten year old girl that needs a lung transplant for any hope of staying alive. As I read her mother’s letter to Secretary Kathleen Sebelius, I was taken back to that painful place, but not for the reason that you may be thinking.
I was lucky – Simon died suddenly. I didn’t have to watch him suffer. I didn’t have to agonize over the fact that a medical procedure could keep him alive. I can’t imagine that horror.
No, this takes me back to the “place” where our medical protocols and treatments don’t make sense. In this case, healthy adult lungs are doled out to patients with the greatest need, as long as they are twelve or older. If they are not twelve, then they have to wait for healthy children lungs. This would make sense if healthy adult lungs didn’t work in bodies under twelve . . . but they do sometimes.
This kind of irrationality exists in the cardiac space too. Students don’t receive a $25 EKG exam even though it has been proven to reduce the incidents of sudden cardiac death by 89%. Every year, at least two thousand students die from sudden cardiac arrest, and if students are lucky enough to make it into adulthood, 400,000 of them will die every year from sudden cardiac arrest.
Yes, sudden cardiac arrest is the leading cause of death of student athletes and adults in this country. Here’s the kicker . . . . so much of this heart disease could be prevented and/or detected from the same student heart screening (e.g. obesity and hypertension) that isn’t offered.
Despite these alarming statistics, we allocate billions and billions of dollars to temporarily repair the hearts of the elderly or remediate the self-imposed destruction of excessive drinking, eating and smoking. How much value does our society gain by prolonging a life in these instances?
What could Simon have offered to this world? What sparks of love or genius will be forever lost if Sarah is allowed to die? As parents, it’s about our kids, but it’s not really just about our kids. They represent the tens of thousands of kids that die every year in this country because we choose to put our resources elsewhere. They die from failed policy decisions.
Hopefully, Sara will receive her lungs. It looks more promising now that a Judge has entered an injunction against the restriction that stands in the way. However, I hope this also focuses our attention on a broken system. A system where money is poured into procedures that extend the lives of our elderly for a few more years. A system where people who have little regard for their own health are given priority over our children. If we expect medical research to be based on facts, then our medical policies shouldn’t be so arbitrary.