Monday, January 17, 2011

Massive Head Wound Harry

Recently, a friend of mine had a terrible scare when she went down for a much needed nap and awoke to find that her baby daughter was unable to breathe. Every parent's worst nightmare, to be sure. The cause was decided to be an unknown virus, and baby is on the mend. But the feeling it gave me to hear this news reminded me of our own children and our own hospital encounters. One in particular . . .

When our son was 3 months old it was determined that he had a condition known as craniosynostosis, described by the Mayo Clinic Staff as: “ . . . a birth defect in which one or more of the joints between the bones of your infant's skull close prematurely, before your infant's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen.” Which sounds bloody awful, to be sure. Our son's condition was (probably) not going to affect his physical well being, but his quality of life would suffer. It's harder to get dates when your eyes are bugging out of a head shaped like the one on the alien from 'Alien'.

The long and short of this diagnosis was that he would be going under the knife, and sooner than later, as it was already later than they'd like. So, when he was four months old, we took him to the Children's Hospital and handed him over to the surgeon. Doctor C___ was a wonderful man with hands more suited to a trades worker than a neurosurgeon; giant, meaty things I couldn't imagine delicately poking around in people's heads. But that's what they did, and do, presumably daily. Before we gave our child over to the sawbones, however, they were required to describe in detail the procedure they were about to attempt. Which was unfortunate for us, as we had barely convinced ourselves that everything was going to be fine. So after hearing at length the procedure and its various steps (including flaying open the skin over the top of the head from one ear to the other, cutting and removing parts of the skull, monitoring of blood loss and possible complications) we were required to – a bit more hesitantly - hand over our kid and hope for the best. I think we both secretly feared the worst. Maybe not so secretly . . .

After giving our baby over to the carving committee, we then entered the world of the waiting room; a disquieting place, but at the same time a window into the soul, a glimpse of raw humanity and a quantum irregularity of sorts. Everyone is there for more or less the same reason, and you all feel more or less the same sense of overwhelming dread of the worst case scenario that could be about to play out. The levels of these emotions are palpable, the parents of children there for dental surgery are less on edge than those of the neurosurgery patients, for instance. But everyone there is in a similar state of tentative hopefulness, both for themselves and others in the room. When the staff members come through the door with their announcements of whose surgery is finished, everyone hopes it will be their turn to be called, but also experiences a sense of relief and happiness for whomever is relieved of the awful tension of the place. As for us, our boy's surgery took far longer than expected, and every minute seemed to crawl by more slowly than the last until our worst fears must surely have been realized and we were just waiting for the inevitable, heartbreaking disaster to befall us, all the while keeping up a front of quiet, positive calm and taking solace in each other family whose time had come to leave.

I think the surgery took about an hour and a half longer than the original estimate, maybe two . . . there are many details about this experience that are foggy, to say the least. Suffice to say that time continued to slow until it seemed like some kind of torture or punishment.  But eventually we were called upon to leave, and I at once felt great relief and a small pang of guilt to be the ones leaving, knowing that most everyone in the room would be wishing it were them. For some reason I can't exactly recall (again, many things have been obscured to memory here) I was the first to see my son after the surgery. The surgeon and his staff had warned us that after the surgery he would appear very swollen and that we should expect to be shocked at his appearance but that it was all very normal after such a physical trauma. But he just looked like a little boy with a shaved head, bruised eye sockets and a grotesque sutured incision running across his head. As awful as he appeared, I was flooded with relief to see him there alive. The rest, I thought, was going to be relatively easy . . .

The first night after the surgery, I was disallowed to stay at the hospital and so returned to our friends apartment, lent to us while they were out of town. When I returned in the morning I was horrified to discover that the surgeon's warning had been absolutely spot on: my boy's head had ballooned to gargantuan proportions, swelling his eyes shut and pushing his ears forward until he looked like some sort of fairy tale goblin, his flesh darkly multihued and tightly puffed around his entire head. I wept to see him, and we consoled ourselves with the fact that the drugs might keep his pain a secret.

After three days his countenance had not returned to normal and we became convinced that we had destroyed our child and that he would never look the same again. We began to rue our decision and wished we had let his head turn into the football it was shaping up to be before we meddled with it. Better that than the guy from the Goonies, we thought. Oddly, although they had warned us of exactly what to expect beforehand, the reality of his condition was so difficult to deal with I am surprised when I look back that the staff wasn't more forthcoming with reassurance of his recovery. But I nitpick. The staff at the Children's Hospital were amazing, and deserve high praise for everything they did for us during our stay. I suppose we were more than just a bit panicky.

On the morning of what we believed would be our last day at the hospital, I returned the keys to my borrowed flat into the mail slot at the record store owned by my generous friends. Off I went to pick up my malformed offspring and make the best of our tragic situation. Maybe we could get him a cool mask . . .

When I arrived at the hospital, I was delighted to discover that not only had his head returned overnight to nearly normal proportions, and his eyes opened, but he was actually smiling! Again, tears. Welcome tears. This shit was turning me into a real crybaby.

For more reasons that escape me, it turned out that we needed to stay one more night after all. But I would be able to stay in the room if I was VERY quiet and unobtrusive. So we settled down and tried to sleep, wired awake by our delirious happiness and anticipation of checking out the next day . . . unfortunately, before I could get to sleep, it happened that we were required to change rooms in the endless hospitable bed shuffle so common to cramped facilities, and I would not be able to stay at the hospital in the new shared accommodations . . . I needed to go get that key back, and pronto. Unfortunately, it was Sunday and the record store had closed early, if it had opened at all. I had no place to stay. The story of what happened that night and where I ended up is another story altogether. But in the end, I was well taken care of, and returned to the hospital the next day less than refreshed but ready to take my family home. My son was feeding, and smiling through the haze of drugs, and that was all I needed. I took great delight in parading him around on the ferry home, watching people's smiles slowly morph into various other expressions when they saw the hideous, blood encrusted scar across the little tykes head. Badass.

All's well that ends well, they say, when things go well enough to say it. And all things considered, things had gone about as well as they possibly could. My son's head looks at least as good as yours, and probably a damn sight better. He's a pretty good looking kid.

6 comments:

  1. Poor little guy! I had no idea! One of our boys had hernia surgery when he was 4 months and that freaked us out, you guys had it way worse! All the best from now on!

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  2. funny thing is, we had it easy compared to anyone else in the neurosurgery ward. we kind of consoled ourselves with that, but it was still scary.

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  3. if anything were ever to teach you not to sweat the small stuff, this was it for me...

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  4. what a great story from such a scarey experience. shudder. what we go through as parents hey? however.... as much as i could feel your pain, i LAUGHED OUT LOUD at the descriptions. i'm so glad his head will grow up with his body and just as big as it needs to get. :)

    rachel

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  5. yeah, it was crazy. but he looks great now!

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