“It even glows in the dark.” A teenage boy handed me a rubber band bracelet emblazoned with a rare genetic syndrome, the name of his younger brother, and a verse from Hebrews. As I received this gift and thanked him, I stood in the room of the Pediatric Intermediate Care Unit. A three year old boy was dying, surrounded by a tightly knit family that was giving me assurance of things hoped for as I saw their conviction of things unseen.
A beautiful picture unfolded. The child’s mother, who had lain by his side for hours, slowly got up, helped by her husband. Her vacancy was instantly replaced by their son, the same teenage boy who had presented me with the bracelet moments before. He then sat alongside his brother and placed his arm around him. I watched the scene in my scrubs with my face mostly hidden by the mask required for this patient room’s airborne droplet precautions.
A few evenings prior, I had the privilege of meeting this family on my first day of the night shift. Only mom and maternal grandmother were present then, and the child was admitted for inability to tolerate his normal G-tube feeds. He had tested positive for H1N1 influenza, which mandated that all healthcare providers wear masks when entering his room. Yet my mostly obscured face could not distance me from the warmth I experienced from this family, nor did it prevent the most meaningful encounter I have had with a patient and his family.
Just four days earlier, I embraced the opportunity to perform his History and Physical, the task assigned me by my upper level resident. As a medical student, this was what I most looked forward to. Mom was kind to supply additional details of the journey of his Cockayne Syndrome diagnosis and answer my questions about his current admission. She had started a Facebook group, Caleb’s Squad, to give and receive support for friends and family. I told her that no, I couldn’t connect with a patient via social media, but she said that, even so, I could feel like a part of it, too. She told me of the other families she and her family had connected with whose children also had that genetic condition, how their physical resemblance was uncanny. Just a few weeks before, a boy who looked just like her son had passed away in early childhood. They were close, and the loss had hit her family hard, too.
While he had received his influenza vaccine the previous year, this fall and winter she was reluctant to take him to the doctor for fear of him getting sick from other children. He had contacted the flu, and his upper respiratory symptoms, coupled with mild dehydration and regurgitation from the nutrition he received from his gastrostomy tube, had warranted him being admitted to the hospital overnight from the Pediatric ED. The original plan was to improve his hydration and nutrition status, administer Tamiflu and monitor his respiratory symptoms, and observe him as his clinical course improved.
Later that night and the following day, he became hypertensive and required medication to bring his blood pressure under control. His hospital course continued to worsen over the following days, until that morning his labs pointed to a grim prognosis: his kidneys were failing, fast. Hemolytic uremic syndrome wore away at his body, and he was transferred from a regular floor bed to our higher level of care. And there he lay, on comfort measures, his family having just decided to institute DNR/DNI status. A day they knew would come, yet at the outset, this hospital admission didn’t point to that inevitability.
The evening of his passing, all who witnessed it spoke of the sacred encounter as his family sang hymns that filled the children’s hospital wing. His celestial discharge was just two days before his fourth birthday. And now I hold the glow in the dark bracelet in my hands and feel that I am now a privileged member of Caleb’s Squad.
Cockayne Syndrome – Caleb’s Squad – Hebrews 11:1
Year in Medical School: MS4
Grew Up: Chattanooga, TN
College Attended: Davidson College
Favorite Quote: "You are much worse off than you ever imagined, but you are much more loved than you ever dared hope."
- John Gerstner
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