It was 14:30 when we finished the LP, and I'm going to tell this story backwards because I wanted to use that line. It was 14:30 and I'd just gone running for ice for the nurses to put their sample tubes on, and was now carrying one precious red-topped Vacutainer of baby's blood carefully in my hand. The box to ship to Texas was in front of me, complete but for the contents of my tube. We needed serum, though, not blood. Blood does not freeze well.
L looks at me, then at Lindy and Branden - there's not much for three medical students to do on a service with 1.5 active patients - and says "I'm going to $hospital to do a prognosis consult. R's going to the ER to see a direct admit. You guys have lecture in half an hour?" We nodded. "You guys can come with me to do this consult, or you can carry the blood over to the lab and bring the serum back to the clinic."
What's the consult? One must always ask what the consult is before agreeing to go anywhere; consults have a nasty way of going rabid on you.
"It's a baby, 50 days old, former 29-weeker, hydranencephaly." Hydranencephaly. I read about that just last night. The simple version: In hydranencephaly, the cerebral hemispheres are replaced by giant cysts. Babies may have normally-sized heads, but almost nothing remains of the cerebrum - just fluid. This child - I didn't ask, boy or girl, but I can't abide using "it" for any baby - has brainstem and cerebellar function, maybe 10% of his brain. His parents abandoned him when they got the diagnosis, and now he's a ward of the hospital or the state. And his CT scan is looking worse. L was going to the hospital to fulfill one more step in the process of obtaining a court-ordered DNR paper; one more specialist to say that to resuscitate this child, should he try to die, is medically futile.
He has no brain to speak of. This is a baby who can cry, suck, move, breathe, and perform all the automatic functions of a newborn - sometimes the diagnosis is missed for months, until developmental milestones begin to be missed. There are children on the hydranencephaly support group web site whose parents suspected nothing until they were 4-6 months of age. There are children who are seven or eight years old on the website, who demonstrate some basic emotion and awareness of environment, who have a limited vocabulary and communicate nonverbally. I suspect that some of these children have milder hydranencephaly than others.
CP kids, at best. Parents on the site praise the tiny things - "no seizures to date," "doctors need to stop focussing on their textbooks and look at reality," "we've never gotten an accurate prognosis" - and yet the sound of it all rings like hammer-blows to me. Coffin nails. These children, for children they are, human beings they are, worthy of love and appreciation they are - these children are not meant to be long in this world. Every parent's story has a desperate sound to me, a cry out to those who read it to understand that their child is worthwhile. Every story, O Best Beloved, is a defence of existence. Every tale is a justification of money and time and effort and resources, and they read like justifications, like defence statements. They do not read like expressions of glory.
Medically futile. It dawns on me again today, hearing L's exhausted presentation of the facts of the case, that we should not be gods. It slips over me slowly and inevitably, the realization that death is not always bad. When I first thought of going into medicine I had dreams of healing everyone, of nigh-onto raising the dead. I cried out that we should fight to save every life, no matter how close to the ultimate end it was. I was, O Best Beloved, an idealist without understanding.
Now I am an idealist still, but I am one who has seen the dying. I have touched death, taken its pale, cold hand, heard the last breath of a human life echo silent in a silent operating theatre. I have encountered it on wards and in emergency rooms, washed countless human beings' blood from my hands - I can feel it through the gloves, O Best Beloved. And I begin to understand that there are worse things than dying.
There are worse things than dying. And at some point, when the mechanisms of life begin to wind to their natural and inevitable close, it becomes clear what those things are. So many patients are willing to die when the time comes - and yet their families are unwilling to let them go, preferring an unconscious thing in human form, supported by machines and medications to give the semblance of life, preferring that to the simple peace of turning off the support.
I am afraid of that power, O Best Beloved, of the power to disconnect an IV and to power down a ventilator. I am afraid of it, and yet I am more afraid of the power to extend what we call life almost indefinitely. I remember a boy whose tiny two-year-old body maintained those brainstem functions for two days, though there was no activity at all in what we think of as his brain. Long enough for his organs to be donated. That power, above all other things in medicine, frightens me.
We have always been able to kill, O Best Beloved. It is easy to kill; we kill each other every day in quantities no animal species would long suffer. But we have not always been able to stop death. And I wonder sometimes - I wonder if we have attained this power without attaining the requisite understanding necessary to use it properly.
After all, we kill without reason or sense or thought. Will we sustain with the same heedless abandon?
I said I would tell this story backwards, and I am telling it backwards. We all chose, all three of us, to go to the lab with the tube of blood. L didn't seem surprised. Academically, I say as we walk down the stairs toward the gerbil tubes, I want to know what a hydranencephalic baby looks like.
"Personally, though," one of the others finishes, "I'd rather not." We don't need our hearts broken, not again and again. And tomorrow is CP clinic.
We spent an hour of the afternoon, from 1330 to 1430, in the procedure room on the infant unit. My patient, a little baby girl with a seven-syllable hyphenated Spanish last name (R calls her "habañero" in bastardization of it all, and I find myself referring to her as "my little chili pepper") - my baby has intractable seizures, and she's starting to develop a rash that looks suspiciously like an allergy to phenobarbital. She was doing well on phenobarbital, down to about five seizures a day. Down from two an hour.
We got a metabolism consult. Metabolism wants us to send five tubes of CSF on dry ice to Texas, where they will refine and separate the neurotransmitters from it. Five tubes of bloodless CSF, starting with the very first drop. It's vital that this is done properly, which is why we spent an hour doing it...and stuck a needle into my little chili pepper's back three times. The first two taps were bloody. We moved her. I held her head and shoulders down as we drilled through between the spaces of her vertebrae into the column of fluid that bathes her brain.
There was a heart monitor alarming softly in the hallway outside the procedure room. Inside, we were silent, all afraid to move for fear that we would disturb this third and final tap. The Child Neurology fellow did it, taking responsibility away from poor terrified second-year L. We folded her over herself in a mutated sitting position and held her still, held tiny vials beneath the tiny tap in her back. She is sedated by her anti-seizure medications; this morning was the first time I have seen her awake and responding, and we were not pleased with what we saw. She does not move her right side; she gazes to the left. She withdraws to pain on the right - she can move - but when she fusses she kicks one leg and moves one arm only. Her MRI was normal.
Each soft "ding" of the heart monitor was followed by a drop of crystal-clear fluid; I called the vials full when it was time to pass them over. And then I carried her blood, fresh-drawn, to the lab with Lindy and Brendan, because then we could be ourselves, be twenty, be irreverent and human; we were afraid to go to the bedside of a baby without a brain, having just come from watching another baby's precious cushioning fluid fall in droplets into tubes.
We waited for the blood to be spun down, brought back serum and packed red blood cells, 3 mL of life reduced to component fluids. Serum went on the dry ice, in the box for FedEx to take to Texas, to this far-distant lab that required of us perfection, a champagne tap. It went with our hopes - not even of a cure, merely of a diagnosis - because we want to know why this beautiful little girl is getting worse, despite nothing seeming wrong.
We were five minutes late to lecture, but Neurosurgery kids were half an hour late. We took call tonight, Brendan and I, and it was two hours of lively lecture and discussion - the chief resident knows I want to do rural FP and delights in teasing me about it - before they told us to go home; they don't feel the need to keep us there when nobody's going into neurology. Besides, they were going to have to do work.
Home at 7. Recalcitrant I spent three hours eating dinner and reworking the Pearls chapter on Peds Surgery for next year's third-years. And then an hour and a half writing all of this down for you, O Best Beloved (welcome to minsies), because I've been thinking on it all all day.
It feels good to write. Now if I only spent as much time studying.
Tomorrow: going to read up on strokes and tracts and basic neuroanatomy. Really truly. But for now, bed.