The reality of illness at work and the reality of wellness at home

I was changing my daughter’s diaper the other night when I noticed some spots. There was a cluster of six or so around her belly button and a line of them tracing her bottom rib on the right. They were reddish-brownish-purple pinpoints and when I pressed on them, they did not blanch. She did not seem bothered by them at all. I, on the other hand, began to quietly freak out.

I am currently rotating on the pediatric hematology service where reddish-brownish-purplish spots that do not blanch are the opening line in a number of slow-motion tragedies involving such things as leukemia and bleeding disorders. Then again, they also play a part in a number of totally benign and boring stories like heat rash and bruises. Infant skin is like one of those word searches that looks totally random from a distance: a lot of what goes on there means nothing, but every once in a while you need to pay closer attention.

So I saw the spots and I wanted to call the doctor right away. It was 7:15pm, a totally reasonable time to call the on-call pediatrician. But I felt sheepish. When you are a doctor, calling the doctor can be awkward. You know all the questions they will ask. You have completed the physical exam that they would have completed if your child were in the office. You have your own differential diagnosis in your head, and you have a rational sense of when or if your child needs to be seen and what if any further evaluation they might need. Why, you wonder, are you calling someone else when you know the answer already? But then there is also a loud voice in your head that is screaming, “What if she has cancer? What if she has bacterial meningitis? I know everything is ok but what if it isn’t?!”

I called my partner, C, up to see the spots and she said, “Hmmmmm. Looks like she might have fallen against a toy.” I had to agree. I could almost make out the shape of said toy, a rectangle with one corner at the belly button and the other corner up near her rib. Still, I was not reassured. My partner doesn’t even know what petechiae are. “She’s fine,” C said and went back downstairs. Once again, the rational part of me had to agree. She was not sick. She was totally 100% well-appearing. This was a problem that could wait until the morning. This was likely a problem that was not even a problem. I resolved to let that be the end of it. I put my daughter to sleep and then got ready for bed myself. (Yes, I have the same bedtime as my one-year-old. This is what it means to be an intern).

As I lay there in the dark, it became clear that I would not be able to sleep. I worried about the spots. I thought about my patients and the day ahead. Then I worried about the spots again. That very day on rounds, our attending had told us about a case from his residency, a boy who presented to the ED with petechiae, eating his McDonald’s lunch, and was dead twelve hours later from overwhelming sepsis. Sure, he had sickle cell disease, and a fever, but I couldn’t put it out of my mind. I checked on my daughter and tried to palpate her liver without waking her up. I went back to bed. I stared into the dark. Nine o’clock became ten o’clock became eleven o’clock. I snuck downstairs and called the pediatrician’s after hours line, hoping my partner would not hear. I needed to sleep in order to function the next day, so I rationalized that it was for the benefit of my patients.

A nurse called me back thirty minutes later. We talked through the situation. “I’m worried she has petechiae, but she’s totally well-appearing.” The nurse paused. “If you’re telling me she has petechiae, she has to go to the emergency room.” “I don’t know if they are petechiae! They don’t blanch.” She paused again. “Well, lots of things don’t blanch. Are they more red or more purple, because if you’re telling me she has purple spots, she has to go to the Emergency Room, but red spots are fine.” I could tell she had sized up the situation and was trying to reassure me, but she was sitting in front of a protocol book and protocol books do not care about over-anxious intern mothers in the middle of the night. We went around and around a couple more times. “Why don’t I call the doctor on call,” she said.

As I waited for the return call, I sat in the dark in my office chair. I thought about my little girl. I indulged in some worst case scenario rumination. I imagined her having to go through the heinous trial of chemotherapy, the endless sticks and vomits. How would we even get her to sleep in a bubble-top hospital crib? I couldn’t imagine a hospital room containing her, so active and curious and on the move.

My thoughts turned to “R”, a toddler who had died of leukemia while in my care. There are patients who travel with you forever, and R is one of those patients for me. Time does not make my memories of him less vivid. I was a sub-intern in the PICU at the time, a medical student in my last year of medical school. R had been transferred to the PICU in the middle of the night, gravely ill. I was out of my depth caring for him — his oncologists were still talking about treatment while the PICU doctors intimated that he would likely pass away soon. I did not know who to believe and I didn’t have my own experiences to guide me. His room scared me, but I was also drawn there. I could sense that the work of love was being carried out there, despite or perhaps because of the terrible inevitability of his death.

R was pale, almost colorless, and swollen from the chemotherapy and the cancer. He had lost all his hair and he was sleepy most of the time, but still comforted by the presence of his parents. He was so beautiful and I felt a tenderness toward him that I could not explain to myself. Every morning as I went through the familiar steps of the physical exam, I touched him as I would my own child. I wanted my touch to if not heal him, at least bring peace and rest to his suffering body. R’s heart stopped an hour before the end of my last shift and he was coded for close to an hour before his parents asked the team to stop. I hovered beside them the entire time, not knowing what to say or do. His mother sat in a rocking chair crying and his father stood behind her with his hands on her shoulders and there was so much in that gesture about their love for each other and their helplessness and their strength. After R died, they went into his room to hold him and everything became quiet. I had a flight to catch, so I had to leave, and I never had a chance to talk to them again. I think about him and them often, though I have never spoken about him to anyone.

The phone rang. It was the nurse. “I talked with the doctor on call and she thinks it’s probably nothing. Wait until the morning and if they are still there or you are still worried, call the office and make an appointment to be seen.”

“Thank you so much,” I gushed. “Thank you so much.” I wanted to convey to this person how grateful I was to her and to the doctor, whoever she was. “You have no idea what a gift that is.” I was crying, embarrassed and euphoric. The safe over-the-phone answer would have been to send me to the ER, but one of them or both of them had understood that if my daughter had truly needed to go the ER, I would have already been there. They understood that what I needed wasn’t medical advice, it was reassurance, and they had the courage to reassure me.

By the morning when I woke up, I couldn’t believe how scared I had been. In the light of the day, the spots were clearly a bruise. Two days later, they were gone, with only me to remember them.

I wonder how the situation would have played out had I not been a doctor. Either I would have made nothing of the spots, or called about the spots and ended up with a long and fruitless ER visit. Either way, I think the quality of the terror would have been less acute. The average person does not have a repository of worst-case-scenario images to match every sign and symptom. As a pediatrician, I didn’t need reassurance less, I needed it more.

I did not realize before the spots episode how much effort I expend maintaining a separation between the reality of illness that I inhabit during the day and the reality of wellness that I inhabit at home. Sometimes the one intrudes on the other in ways my rational self cannot prevent. I hope this will not negatively impact my daughter (or my partner, who relies on my medical judgment and was understandably shaken by this false alarm).

On the other hand, I never take my daughter’s health for granted. The possibility of illness sits on my shoulder and reminds me to be humble and present, both for myself and my family and for all the parents like R’s parents who are suffering the unimaginable. It makes for a state of parenthood that is more anxious but also more alert and sacred. I am grateful in advance to all the pediatricians who will care for me and my family over the course of my daughter’s life, who will allow me to be afraid, who will give me the gift of reassurance, who will hold my anxiety in confidence and allow me to be a parent instead of a physician.

Miriam Stewart is a pediatrics intern who blogs at what begins with m and Mothers in Medicine.

View 1 Comments >