theme of the week...and year

So no one told us that the Pediatrics Ward A was going to have a string of similar cases. But on the floors, this seems to happen a lot---there are themes of the week. When I was on Medicine, it was obstructive jaundice and drug rashes. Oh and PRES, which I won't go into cuz it's supposed to be SO rare, but I saw 2 cases in like 4 days. So this week it is babies without brains.

Actually with malformed brains---no cerebrum, but yes brainstem. I think we have about 4 holoprosencephalic children. And then around the same time we had 3 cerebral palsy children too. So one night one of my residents said something like "over 60% of my census has no brains, and 80% have some sort of mental delay."

Now, if your baby does not have a brain you would assume that it cannot live very long---and that truly is the case. But end of life issues are rough no matter what age. We have a child, call him LM. When our teaching resident took us to listen to his breath sounds, he could not have prepared me for the sight; I was ashamed at my brief internal repulsion. He has no brain: his eyes are therefore pushed way out of their sockets; he has a total cleft lip and palate, and therefore no nose, just a bit of skin hanging over a mouth-nose-hole. His body cannot regulate his electrolytes---particularly his sodium. However, when his sodium gets really high, he does not seize...because you would need cerebral tissue to do that. He does have a brainstem though, so he breathes, his heart beats, the rest of his body is well formed. He's alive. His mother is a very young, and she is so devoted to him, which is why he's lived 8 months. She is at his bedside 24-7. But my Attending puts it best when she says "Oh, that baby just breaks my heart." Because if he goes on like this he will have to be intubated and ventilated. And it will be that much harder for mom to say "stop this machine" than to have her baby pass on with her at home comfortably. The nurses and some residents complain about it: "Just let that baby go to heaven!" But how do you say that to someone who carried him inside her body? To anyone who's loved him since the second his existence was known?

My only patient at the moment, TL, also has no brain. Every morning I come in and her head is ginormous---she also has hydrocephalus; her brain fluid was obstructed and so was just collecting, giving her a big 'ol head. She was given a shunt and hopefully it will go down. She too has a salt problem. And she too has a cleft lip and palate; so feeding her is insane and she's getting a tube placed into her stomach soon. And it makes me feel awful to think it, but I do; what is the end point? How long can she live like this? But she has very devoted parents who want everything done for her.

My roommate had a different perspective this past week. She is on OB/GYN and has had a lot of fun helping deliver babies, but last Thursday saw a baby die. The situation was very emergent, and they did all they could, but when the baby was delivered she crashed and could not be resuscitated. Now I've seen a lot of implied soon-til-death, and one patient already dead---but I've never seen someone be alive and then be suddenly gone. So later that Thursday night I'd gotten off the phone with a friend to find G WEEPING to Grey's Anatomy. I'd missed yep, all of it, and she was watching the end (and G never watches Grey's). Apparently George's father died, but what got her most was that HE KNEW the prognosis. Only he understood what was going to happen to him; his relative said "He's going to be alright, though, right?" So G turns to me with her eyes all red and says "Katie, what on earth are we going to do? What are we going to do when our parents are going to die, and we know the truth and no one else understands it like we do?"

Which reminded me of Psych class last year. We learned about the milestones of each med school year. Year one was dealing with a new workload and dissecting a cadaver. Year two was a time for hypochondriasis---studying diseases causes you to believe you have all of them. Year three is dealing with mortality.

This year has taught me that death is a part of life. Sounds simple and cliche, but if you understand me, I'm saying that after a lifetime of thinking it cruel and unfair, I eventually realized that sometimes it's OK to die. We don't really treat death like that as a society. It's never very happy, but it's just...there, waiting. But dying comfortably can be more important than drastic measures taken for a severely limited life.

It's a very hard lesson to learn. It's still getting mixed reviews here in H-town.