Page 6 - Mecklenburg_Medicine_May-2016

President’s Letter

... And Losing Them

By Stephen J. Ezzo, MD

Christopher came to me early in my career. His parents, One instance stands out from all the rest: Christopher walking
both professionals, had relocated from California down the hallway. Orthopaedic surgeons and physical therapists who
and were referred to me by my residency director, would accept only his best, combined to bring him toward me with a
JC Parke, MD. The fact that JC felt I was capable of smile that said he understood the significance of his achievement.
caring for Christopher was flattering. JC wore many hats — general
Now, I don’t cry. First, I’m a man. Second, I’m Italian. Third,
pediatrician, educator, neonatologist, geneticist — and it was for the I was raised in a generation with such boyhood heroes as John
Wayne, Batman and Sinatra. “Tears of joy” was a concept, not
last category Christopher’s parents originally had sought him out. a reality. I learned how wrong I was on that day, and I have
Christopher to thank for it.
By the time he arrived, Christopher had been evaluated at three
About 10 years after I met him, Christopher died in his sleep.
genetics centers, trying to determine the cause of his anomalies. The autopsy revealed several acute episodes of aspiration leading to
asphyxia as cause of death. His funeral was both sad and joyous, as
Nothing turned up. What a list it was. Every single organ system he touched the hearts of so many. He remains with me to this day,
serving as one of my guiding angels.
appeared to be affected. I spent hours poring over the records the
Aleeah was an adorable little girl who never grew quite right.
Although we cannot mom provided to catalog Her growth and weight gain were maddeningly slow, and her little
always do it immediately, protuberant abdomen gave her a kwashiorkor look. Yet, despite
them in his new chart. numerous labs, imaging studies and seeing every specialist I could
This was back in the days think of, all we were left with were some mildly elevated liver
of paper charts, and our enzymes and a liver biopsy showing fatty deposits … but nothing
definitive. Her mother was incredibly patient with me, and I often
we need to grieve the clinic used 8-inch-by- was left with telling her that since all other evaluations were normal,
loss of our patients. 11-inch sheets of paper Aleeah’s abnormal labs were stable and she continued to make slow
with 41 lines on each but steady progress in growth and development, I remained hopeful.

And not just with the side. I filled an entire But reality intruded on our hope. Aleeah’s undetermined liver
family — we must set page front and back. A disease worsened, and she was placed on a transplant list at a regional
few weeks later, when medical center. During her initial evaluation there, an MRI of the
brain revealed extensive white matter disease (one done in Charlotte
aside time for ourselves, he was hospitalized a few months earlier was normal). She was removed from the list,
with dehydration from went downhill rapidly and soon died. Her autopsy revealed the same
fatty liver we knew about. Her brain, however, revealed a white
whether alone or with viral gastroenteritis, my matter disorder seen exclusively in Ashkenazi Jews. I called the
loved ones, to mourn partner on call had the neuro-pathologist who assured me his diagnosis was correct. When I
presence of mind to go to informed him she was an African-American little girl, he withdrew
his statement and could offer nothing else.
them, honor them and the office and copy my
remember what they notes for insertion into Aleeah’s funeral was more somber then Christopher’s, as expected.
the hospital chart. The I sat in the church wondering where I had gone wrong, what I could
have done differently and what clue I had missed. When her parents
taught us. parents were impressed. embraced me, thanked me and said they loved me, I broke down.
I wondered what I had
We all lose patients — it is part of our profession. Some, like
gotten myself into, and Christopher and Aleeah, impact us more because we are closer
to them. Both their deaths were more than a decade ago, and
also, what Dr. Parke was I have made my peace in both cases, but these children never
will be forgotten.
thinking. If the specialists could not figure Christopher out, how
So why do I write about them now? It is because of an
could I? I soon came to realize his parents were not looking for observation. My wife, who is the type of physician I want to be
when I grow up, was reading a recent article about US Air Flight
answers, but rather for someone who would be there for them when 1549 that had a forced landing in the Hudson River more than six

needed, anticipating changes as he grew. Despite that, about every

two to three years we repeated genetic testing, hoping that newer

techniques would reveal an answer. We never found anything, and

I could only believe that in some way this was an error in collagen

synthesis. I told his mom he had Christopher Syndrome (always

avoiding the word “disease”).

Even with all his problems, Christopher was remarkably healthy,

and his innocence and good nature never failed to brighten my day.

He never learned to speak our language, but I was quite certain he

was more aware of what was going on than we gave him credit for.

He allowed me to examine him with a grinning tolerance, as if to say,

“Sure, buddy, give it your best shot.”

6 | May 2016 • Mecklenburg Medicine