The Boy who had Seizures
My first patient during my pediatrics rotation was a 13 year old who was diagnosed with Lennox-Gastaut syndrome, an intractable pediatric seizure disorder, at the age of two. For the last 11 years, these abnormal electrical waves had washed away any semblance of normalcy in his life with unforgiving repetition. When I met him for the first time, he was non-verbal, non-responsive and severely developmentally delayed. Over the past decade, he had failed every anti-epileptic medication on the market and had only recently become asymptomatic on the ketogenic diet. But all of a sudden without any apparent reason, his seizures were coming back with increased frequency and severity.
While I was taking his history, yet another seizure cluster began. His mother helplessly sat by his side firmly holding his hand and pleading with nature. But the seizures continued to come every two minutes. There are so many drugs and devices in our arsenal, I insisted to my resident. Surely there must be something that we could do for him. But to my dismay, after many milligrams of drugs A through Z, we had run out of options. Medicine could now only honor nature’s dominion. “But isn’t there anything else that we can do for him?” I asked. He replied, “We have no other drugs to try. That’s where our treatment algorithm ends. Let’s continue to monitor his vitals and observe him on the screen.” Quietly, we retreated to our work room, not one of us suggesting that perhaps we should try being by our patient’s side.
The next morning, I returned to their room with a heavy heart and asked them how they were. The mother told me that he continued to have seizures the entire night and only stopped about an hour ago. She was exhausted, and hungry. Her back pain was worsening. She asked me if she would be able to take a short break to grab breakfast and to stretch out her back. She’d be back momentarily. Without fully understanding that she was asking me to look after her son, I told her to go ahead. I promised myself that I wouldn’t run away again.
For the next 45 minutes, he did not stop moving. Every 5 seconds, he jerked and turned erratically and each time, I lifted him and returned him onto his back. At first, I was terrified of inadvertently harming him, but over time, I found comfort in the innocence of our interaction. As minutes went by and our action-and-reaction became routine, I began to open up to him about things that had been on my mind. Reminded of how I behaved the night before, I talked to him about how I felt as a medical student starting my clinical rotations, how saddening it was to see patients who were failing to respond to treatment and how I would give anything to be able to contribute to care in a meaningful way. “You can’t understand me, do you?” He remained his usual self – unresponsive, non-verbal. He turned again to his side. I turned him back. Feeling defeated in my efforts to calm him, I kneeled down by his bed and rested my arms on its rail in hopes of catching a brief respite before our dance would resume.
But at that very moment, something changed in him. He suddenly stopped jerking, slowly rolled into my arms and fell asleep peacefully. He slept like that for the following 30 minutes, uninterrupted by seizures or spasms for the first time in days. With the feeling of holding the most precious person in my arms, I remained still. His head lay only inches away from my chest, now pounding. When the mother returned to the room and realized what had happened, she, too, stopped in her steps and softly said, “Oh my God.” In that moment, I realized that something changed in me, too.
I learned an invaluable lesson that day as I sat at my patient’s bedside, connected to him in ways that I never imagined possible. At the heart of medicine is a resilience that does not expire. It is not the resilience of single individuals but of a group of people who are devoted to the care of a patient. And it is this resilience that carries us physicians, nurses, caregivers and patients alike even in our most vulnerable moments. Mothers who have not slept for days return again to be by their terminally ill children’s sides. Doctors who have experienced the bitter taste of futility return again to find new clinical solutions. Medical students who have felt incompetent gain renewed strength from admiring those around them. And patients, who above all, experience the most pain and loneliness in the course of their illnesses, always find enough courage to fight on.
Ultimately, in looking back on my journey, the moments that humbled and deeply changed us for the better were ironically not medical miracles. In fact, in the end it was human miracles, those that were displayed by our patients and their families even in the darkest and most hopeless corners that medicine could not reach, that reminded us of who we are and what we are capable of.
Jason Han is a fourth year medical student at the Perelman School of Medicine at the University of Pennsylvania. Article initially published in his personal blog and reproduced here with permission from the author.
