Alpha and Omega

long and winding roadBirth and Death are inevitable, unpredictable, and completely unique. In medical school, I attended many births. I loved delivering babies so much that I almost chose to specialize in obstetrics instead of pediatrics. But then a mentor noted that I was more interested in caring for the baby than the mother after the birth. A pediatrician is born. My residency training was rigorous with a heavy emphasis on in-patient care. Prior to rotating in the pediatric intensive care unit, I witnessed only a handful of patient deaths. Most of those children had an untreatable cancer and the deaths were expected and happened privately without the advanced technology found in the PICU. The others were premature infants born before the age of viability. Tragic? Yes. Expected? Unfortunately. Peaceful? I hoped so.

Now after eight years as a critical care doctor, I have seen more death than I care to remember. When a child gets admitted to the PICU and treatment is futile, parents rarely move the child to home or to a hospice setting. Often the children are tethered to dialysis machines, pumps, ventilators, and monitors. All of it looks like it is healing the child, but in reality, near the end, its only prolonging the inevitable. Understandably, parents are reluctant to remove their children from all that technology to a more natural surrounding. So part of my job has become helping families withdraw this medical care bit by bit to allow their child to progress to a natural death.

Each death, like each birth, is completely unique. For every wonderful, happy, and sometimes harrowing birth story, there will eventually be a story of death. Hopefully it will fall along a natural timeline and occur after the death of the parents. But when it doesn’t, that death, that story, is equally special and honored just like the birth.

I remember being called to a rapid response. That’s when a patient on the general floor is deteriorating and an escalation of care is likely needed. This particular child was developing respiratory failure due to a rapidly growing tumor that was compressing the breathing center in her brain. No amount of chemotherapy or radiation could save her. Yet, the parents wondered if they should ask me to intubate her and support her breathing and likely her heart with the technology available to me in the intensive care unit. Her diagnosis was less then a week old and they were completely caught off guard. As I spoke with the parents, total strangers, who were now looking to me, another stranger, to tell them what to do, my fellow was deftly holding some oxygen on the child to allow me time to explain to them their options. Ultimately, they decided to bring her to the ICU so they could be with her while she died.

My fellow and I urgently transported the small child downstairs. Her heart rate was unstable and her breathing erratic. I was afraid she would die in the elevator if we didn’t hurry. We made it to the PICU and placed her in a private room devoid of any warmth or amenities. Because it was change of shift on a Sunday night and these parents knew none of the doctors in the ICU, we decided to stay with the family as the only familiar faces in the unit. Given the child’s breathing pattern and blue color, I thought the death might be fast, but then again, you never know. Initially, the parents let out heart wrenching sobs and held her closely. They watched her every breath and looked to the medical team as if to say “why isn’t she dead yet?” They had thought that once they made the decision to let her go, it would happen immediately. But this little girl had her own timeline I suppose.

The nurse quietly dimmed the lights and gave them a blanket for snuggling. Eventually, the fear and panic in their voices gave way and they started to relax. They started to talk to her. They told her that all of her aunts and uncle, grandparents, and cousins were at the hospital hoping that she’d get better, but it was ok if she didn’t. They gave her permission to go and wished her peace. After more time passed, the three melted into each other and like only a mother and father can, they began to gently tease her about her messy room and her penchant for Disney princess everything. They recounted the story of a recent vacation when she got to meet Snow White. My fellow and I hung back waiting to give the child morphine or Ativan if she seemed distressed. But she didn’t and her breathing, though labored, was steady and full. We stepped out and decided to leave them in privacy.

Minutes ticked by and the parents’ sobs quieted. Every once in a while I would hear then giggle and kiss each other. They rocked their little girl and sang her lullabies. Eventually, I left. Her breathing had stabilized and I thought she might make it through the night. Maybe they would want to bring her home in the morning and let her die in her room. The truth is I had no idea when she might die, but I knew her parents would keep her comfortable,and there was no longer a role for me. They would be comfortable with any doctor now. They were in charge.

As I walked to my car later that night, I imagined them telling their little girl the story of how they met and fell in love and the day that she was born and how amazing she was. I marveled at their strength. The next day my partner told me she died at around four AM.

I too will remember their little girl. She loved princesses, didn’t like to pick up her room, and she wasn’t ready to die until she heard one more song, one more bedtime story and had one more kiss from her parents. She gave her parents the gift of time to talk to her, to let her go and to tell her their stories. There is an inexplicable miracle in every birth and in every death.

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