Trying To Parent
By
Leonard Zwelling
https://www.nejm.org/doi/full/10.1056/NEJMp2216655
When I was in my gastroenterologist’s office recently, waiting for him after my vital signs were taken, I was reading an actual paper copy of The New England Journal of Medicine. I do not read the on-line version very often other than to identify a link for a blog like this one. My doctor, when he arrived, said he rarely saw a paper copy any more. I have been reading paper copies of NEJM since 1970 in medical school. I’m not changing now.
In a recent hard-copy issue I received (April 6) there are three cogent editorials.
The first was about how the FDA needs to revise its accelerated approval process for non-HIV, non-oncology drugs like those targeting Alzheimer’s Disease. It was a great summary of several issues including the use of surrogate end-points to evaluate drug efficacy and the risk of missing significant side effects in the small trials often used to gain accelerated approval.
The second was about the importance of having a diverse human subjects population in clinical trials if the results of those trials are to be useful to all patient groups. It too was a good summary.
But the article attached above touched my heart. It was written by Stephen Landy, MD of the Department of Neurology at the University of Tennessee Health Science Center College of Medicine in Memphis and the Tupelo Headache Clinic in Tupelo, Mississippi. Dr. Landy has a younger brother with cerebral palsy due to a mishandled forceps delivery at his brother’s birth. The essence of the story is about how hard his parents and his whole family worked to mainstream his disabled brother and despite all the efforts of that family, his brother succumbed to depression. It is also a story about how his brother was irreparably harmed by a complex of non-communicating care givers. In my own family, I have seen this very phenomenon play out with care fragmented among many specialists none of whom speak with one another. It is for this very reason that I availed myself of the services of a concierge doctor who quarterbacks my care even as I must be an active participant in that care as I approach 75.
Dr. Landy’s brother had originally been cared for by one doctor when he was younger, but as his brother grew into adulthood, the fractionated care of today’s medicine became the norm.
All the while, Dr. Landy’s parents did everything in their power to try to normalize the life of their disabled son. That’s what parents do, for what all parents hope for is that their children will lead fulfilling lives and be happy and independent. That’s what Dr. Landy’s parents and his whole family wished for his brother.
Dr. Landy’s story really reflects not so much the unusual actions of two parents to try their best to create a normal life for a disabled child, but the fact that his parents’ desires for this child were really not so different than any parent’s desires for any child. And isn’t that the whole point of the diversity initiative. It’s really about giving everyone a shot.
The truth is that all men (and women) are not created equal. Some are born with great natural gifts as if they were born on third base. Some are born on third base because they were born into wealthy families. But no one born anywhere let alone on third base hit a triple. We all started from the same 46 chromosomes.
What parents want is the best chance for their children to be happy. All their children. The efforts of Dr. Landy’s parents were in some way extraordinary, but in most ways the same as that of any parent.
Read the piece. I dare you to not be moved.
Dr. Zwelling’s new novel, Conflict of Interest: Money Drives Medicine and People Die is available at:
barnesandnoble.com,
and
directly from the publisher Dorrance at: https://bookstore.dorrancepublishing.com/conflict-of-interest-money-drives-medicine-and-people-die-pb/
