I'm on this case now of a cute little kid with infantile spasms...which are not responsive to treatment. The parents refuse to accept the terminal character of this illness, that their child will not get better. I can't blame them, I can't even imagine how difficult it would be to be in their position. But the kid is suffering, drowning in his own secretions, barely able to elicit a cough reflex. He keeps getting aspiration pneumonia due to his inability to swallow, and he is getting them more often. Concurrently, his seizures from the infantile spasms continue to increase in frequency and duration despite our best pharmacologic efforts. His brain is becoming less functional with each day, and the changes are irreversible. So, as I stood there with my attending and resident while we spoke with mom and dad about what are our hopes and expectations for the kiddo, I felt so incredibly sad. Young parents, in love with their baby, hoping that the child they cared for, did everything right for, and love above all else, are watching their baby slowing slip away...but they refuse to give up on him. The odds are most certainly not in their favor, but what else can they do? This is their baby, their whole world, who was born absolutely perfectly and was taken care of perfectly, and out of the blue, he was unbelievably unfortunate, developed severe infantile spasms, and he will have a very-much-too-short life. It is devastating. It must be so hard to be a parent; so many things might go wrong with your child, and your child is your world. Thank god for all of the healthy kids; some parents are luckier than they'll ever realize just to have healthy kids.
I'm happy to see that some of my passion for medicine has come back to me!
(you can tell I haven't been too happy with this rotation --- I haven't posted a photo in over a week!)
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