Mes chers amis et famille,

“I came because they told me you were going to be here.”

Mom is 18. Her son is 11 months old. The story comes together in fragments: non-vigorous at birth, fever and seizures two weeks later, no help from that hospital, and now, they’ve traveled from Liberia for my evaluation of the developmental progress he hasn’t yet made. By one year, he should be well on his way to walking and talking; tied tightly to his mother’s small frame by a handmade blanket, he lacks the neck control he should have established nine months ago to support his profoundly microcephalic head. 

She brings a large yellow envelope with a CT film of his brain. I can tell from a quick glance that it’s not good: where the left hemisphere should be are extensive hypodensities of irreversibly injured cerebral tissue, atrophying; the other parts aren’t much better. Examining the child, he is as stiff as a board, locked-in an extensor posture due to destruction of deep nuclear structures. Compared to his head, his body is massive, packed with extra weight from either damage to the hunger regulating parts of his brain or because in his frozen state he’s so uncomfortable that mom is constantly comfort feeding.

As I lift his face towards mine, struggling to elicit functions of the cranial nerves, mom comes up right besides me and starts cooing lovingly at him. She seems to forget that this is part of my assessment, and as I shoot my translator a look so he’ll ask her to stop, it also pains me to separate them. I finish and pass the child back to her. She fastens him onto her back. Would she like me to review the scan with her, I offer. She does. 

A strategy in breaking bad news is firing a warning shot and then gradually leading a family towards the prognosis. The damage on the scan isn’t subtle to an untrained eye, and her quieting lets me know she grasps where this is headed. 

I don’t like telling parents what their baby won’t be able to do. I strive to always leave room for hope, even if it’s tempered. She appears (her masked expression now harder to read) briefly thankful when I offer that I still believe he’ll learn to control his unsteady neck and sit, perhaps, independently – which will at least ease the burden of care taking. No, there’s no cure for this, not even back in the USA, I respond. 

Sharing negative prognoses is a sadly prominent part of pediatric neurology. Yet as she leaves, I find myself more shaken than usual. This bad news will not be the last I break – but seeing her young hopes (traveled from so far!) wither with each successive sentence from my mouth crushes me. No, not even the foreign specialist can fix this problem. 

I will never get used to – and I will never accept – the culture within medicine here that permits the doctors to hide behind unexplained tests and specialist referrals in their intellectual towers like some technician. I will level with the families of the patients I care for so far as they can hear it, still leaving room for hope – but not miracles. Perhaps she’ll no longer spend whatever money she has chasing them. I’d asked her to come back to see how we can help him reach his potential; I’m not sure she will, but I’m at least sure that now she understands.

A la prochain,

Le Gringo

//