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First person

My son was sick, and nobody could tell us what was wrong

Doctors had no idea what was going on inside my son's body, Jennifer Philp-Zakic writes

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We had discovered the small, bony growth on our newborn son's rib only weeks before. Upon examination, our former pediatrician confidently told us – as if we were old friends – that it was "just a little birth defect and nothing to worry over." We switched doctors shortly thereafter.

The new doctor was young, energetic, pro-active. She requested a chest X-ray immediately, though I put it off due to a combination of laziness and sleep deprivation. Fear of an actual problem hadn't crept into my consciousness quite yet.

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"Is this going to hurt him?" I murmured to the X-ray tech while he introduced me to the medieval-looking device. This contraption was made to keep a baby upright and motionless in the seated position, arms stretched out as far as they could above the head.

As we strapped him into the plastic and metal beast, he screamed, hyperventilated and started to sweat. I hovered between empathy and annoyance at the fact that he always seemed to do things the hard way. He never slept, and it wasn't until I had another baby three years later when I truly understood that newborns are not regularly awake for 15 consecutive hours.

I surrendered my four-month-old to this machine, handing him over with full awareness that he was about to be scared and uncomfortable. As this awareness grew, my ignorance of the potential gravity of the situation started to fade.

My life now exists in two compartments, segmented neatly by a phone call from the doctor only hours later. There is the before, consisting of long walks with my baby, sitting and drinking coffee and going out of my way to find perfect vantage points of Lake Ontario. And then, there is the after.

This phone call came only hours after the X-ray, as I was deciding whether to wake him from a nap. It was an unusually long one for him – nearly one hour – and it was getting close to 5 p.m. I was worried he wouldn't sleep that night. Our pediatrician asked if I was sitting down.

"Yeah, sure," I lied.

Her voice has a subtle, manic quality to it. My gut twinged.

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"Have a glass of wine, pack a bag and go to Sick Kids."

I admire her for trying, even casually, to make the situation better. Before that moment, I had never considered his sleeplessness and nearly constant crying could be because – as the X-ray revealed – he had plenty of broken bones. Enough broken bones to cause a doctor to panic, or at least enough to tell his mother to have a glass of wine and come to the ER.

"Will he walk?" I asked through sobs.

I cringe at this question now. Such a newbie I was to this world, this world of sick children and doctors calling you at home on a Friday night.

We arrived at the ER an hour later. Me, with my tears and endless supply of questions, my husband, with his positive attitude and kind way of speaking to the doctors, and my son, who was content to play on the bed as if it were any other evening.

Information trickled in slowly. We learned the story of his ribcage, how there are an uneven number of ribs, how some of them are fused together. We became accustomed, but never used to, words such as deformity, disorder and broken. We answered the same questions over and over.

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Can he roll over?

Does he take a bottle?

Does he have any teeth?

Do you think he's in pain?

We became accustomed to the hospital hierarchy, how you can safely say "no thank you" to a resident but when that staff doctor comes in, wisely grab a notebook and write every word down. And don't share too much with any of the fellows. They tend to disappear into other parts of the hospital after two conversations.

I tried to keep to an every-three-hours breastfeeding schedule, still convinced that the magic power of breast milk and an adequate growth spurt might solve everything. We might finally get to go home, they would pat me on the back and I would feel like a good mother.

These daydreams were always broken by my new reality: I was a mother to an imperfect child. I had no idea if I caused this, but it was easy to cast blame on my own body. After all, I had cooked him for 41 and a half weeks. I had birthed a complete mystery, probably the biggest real-life mystery I had ever paid witness to. After countless visits from geneticists, neurologists, endocrinologists and orthopedic surgeons, one thing became clear: They had no idea what was going on inside my son's body.

We settled into the routine of living in a hospital. I couldn't leave, and my husband, understandably, didn't want to leave me. So there we were, our tiny family of three, living in one room for a week. It was the room strangers could and would enter without knocking, a room that seemed to grow smaller as the days passed.

The conversations with doctors became less frequent, even taking a positive turn every now and then. They all agreed his bones didn't need casts at the moment, and owing to his good level of movement, that he probably wasn't in any pain.

They told us to treat him like any other kid and to allow him to grow and develop and thrive. The plan was to just let him fall and see what happens.

We were finally allowed to go home. I was to surrender my son once again, this time to something even scarier: the future. The unknown. The world.

This December, it will be seven years since we entered the Hospital for Sick Children for the first time. I know with perfect certainty that the unknown doesn't become less terrifying; it moults to reveal the things I can once again recognize: joy, acceptance, pride, maybe even happiness.

Instead of meekly surrendering him, I hand him over confidently now. To the world, to the unknown.

Jennifer Philp-Zakic lives in Toronto.

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