This is a bit unusual for the PAAD, because today’s article is short, profound, and cannot be summarized. I am reposting it in its entirety during this week in which we are remembering the loss of our colleague, friend and mentor Dr. Ron Litman. Please share with your colleagues who are not subscribers to the PAAD. Myron Yaster MD
A Piece of My Mind
Ethan L Sanford. Losing Ceci. JAMA. 2023 Apr 6. doi: 10.1001/jama.2023.4747. PMID: 37022705 DOI: 10.1001/jama.2023.4747
Ceci died on December 5, 2022, and Terry died on November 11. Ceci was my daughter and Terry was my patient.
As a pediatric anesthesiologist and critical care physician, I had sometimes contemplated scenarios of my own children dying, particularly when patients I cared for died. My brain would put up defenses with vague thoughts like, “I can’t imagine.” Grieving Ceci’s death has indeed been something I could not have imagined. The immense sadness that devolved into endless loops of “what-ifs,” the sorrow melting into an overwhelming sense of failure, and the loss of my professional identity—these are all things I could not have imagined.
Although Ceci’s death was sudden, the months leading up to it were not without loss. We noticed progressive weakness in her right leg when she was 9 months old. On Ceci’s first birthday, she could not pull to stand or crawl. Every movement appeared to be a futile battle against gravity. After several visits to various physicians and physical therapists, Ceci underwent magnetic resonance imaging (MRI) on Halloween to rule out any structural abnormalities. I felt proud when she awoke from anesthesia smiling. Moments later, my world fell apart as I read and reread the report from her MRI. There was a mass involving the nerves exiting Ceci’s lumbar and sacral spine.
The next month was an avalanche of shock, anger, and sadness as my wife, Nina, and I tried to navigate the next steps in Ceci’s care and contemplate her prognosis, her future. She underwent an 8-hour surgical biopsy with partial laminectomy. However, the type of tumor was never fully elucidated, despite extensive pathological testing including multiple external reviews. There was no treatment plan. The unknown was agony. Despite worsening mobility, Ceci remained a happy toddler. She learned new words and laughed with her sisters. We vowed to help Ceci face whatever came her way and envisioned her leading a fulfilling life despite her disability. My wife—ever the optimist—researched local wheelchair basketball leagues.
After a scheduled outpatient follow-up MRI 5 weeks after her tumor was initially discovered, Ceci woke up cheerful as before. She came home, played, ate, went down for a nap, and never woke up. My mother-in-law and I performed cardiopulmonary resuscitation in our living room until the ambulance arrived. Having done this so many times on the job, I must have relied on muscle memory with my brain on autopilot while trying to revive my daughter. When we arrived at the emergency department, it was clear that any version of Ceci we had known or hoped for was gone. My wife and I asked the team to stop the resuscitation, so we could hold her.
Just a few months earlier, shortly after Ceci’s first birthday, I met Terry, a rambunctious 3-year-old who dreamed of being a cowboy. Terry drowned in a swimming pool during a family gathering on Labor Day and was brought to the pediatric intensive care unit (PICU). Although his heart had been revived, Terry’s brain suffered irreversible injury. His parents, Johnathon and Kathryn, struggled to understand the concept of brain death and felt the clinical team’s assessment was rushed. Wracked with sorrow, they turned to their Christian faith for guidance. While they decorated Terry’s hospital room with pictures depicting resurrection and sang songs about Jesus, the PICU team worried his family’s hope was at odds with the medically inevitable.
I quickly built a camaraderie with Johnathon while he spent his days and nights in the hospital with his son. We talked about our shared love of Colorado and coffee with oat milk. Occasionally, I tried to explain the ramifications of Terry’s brain injury. We made timelines, changed timelines, made care plans, and changed them. I thought about Terry all the time. I worried his family would not accept his death and that my colleagues would think I mismanaged the case by giving into their wishes. I worried my reputation as a physician might be harmed if the case became public. At times, I felt angry they could not let Terry go and that my efforts were thankless. I sometimes resented their hope.
The day after Ceci’s tumor was discovered, I visited Terry’s room to tell Johnathon I had to step away from his son’s care. We cried together and Johnathon prayed. By that point, Johnathon’s family had agreed to brain-death testing and were contemplating extubating him. As I apologized for not being able to continue caring for his son, it was clear our roles had been reversed. Johnathon encouraged me to focus on my family. I sat in fear and clung to hope.
Shortly thereafter, Terry was extubated and died in his parents’ arms.
After Ceci died, I felt compelled to speak with Johnathon. One evening, I locked myself in our bedroom’s walk-in closet, which had been Ceci’s room—where she slept and where she died—and called Johnathon. I told him of my shame. I felt I had failed as a father and lost my identity as a doctor. My job as a physician was to save children, yet I couldn’t protect Ceci or save her life. Johnathon explained that I had misidentified myself. Yes, medicine is my job, but my identity is centered on who I am, not what I do. Johnathon told me that in all our time together in Terry’s room, he never expected I would save his son’s life. Rather, he saw me as a companion who might offer guidance and comfort.
We still do not know how Ceci died or much of anything about her tumor. The uncertainty has been especially difficult for my wife, a radiation oncologist. I’ve worried that these unknowns might lead to debilitating anxiety. Over time, however, my awareness of life’s uncertainty has turned my focus to things I can control: to engaging more in the joyous parts of life, to focusing on the people I love, to living better and kinder, to gratitude, to hope—not hope that horrible things like unexpected death will no longer occur but hope by building resilience and stronger human connections in the face of tragedy.
I sometimes wish every physician could understand the loss of a child. I wish they could understand how I miss Ceci achingly, how I miss her in my bones. I miss her head on my shoulder and her squeals of delight at the wild bunnies in our yard. I wish every physician could understand—without going through the unimaginable—that our success in this profession isn’t defined by achieving external validation metrics but rather by our ability to care for and about our patients. I feared losing Ceci would untether me from life, from myself, from my profession, from any possibility of joy or meaning. With time, it has only intensified my appreciation for being a father and husband and for helping others to heal.