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?! ACCCCKKKKKKKK!!!”
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 and lives in the Philadelphia area with her partner and
thirteen-month-old daughter. She blogs about the joys and challenges of
juggling motherhood and medical training at whatbeginswithm.wordpress.com. Details about "R" have been altered to protect patient and family privacy.
