Chapter 1: every diagnosis comes with its own asterisk

I should go back to the beginning.

Not the beginning-beginning—just the part where things stopped being easy. Where the motherhood story I thought I was going to have started rewriting itself quietly in the background, one chart, one scan, one specialist visit at a time.

Evelyn was born in March 2018. Healthy. Screaming. Beautiful. Full of the usual chaos and milk and wide-eyed staring. She slept okay. She fed okay. Her little head smelled like something sweet and perfect. We were exhausted, but in that regular, unremarkable, “welcome to parenting” way.

And then, maybe a few weeks in, our family doctor noticed something.

Her head was growing a little faster than it should’ve been. Nothing wild. Nothing that set off alarms in the hallway. Just enough to raise an eyebrow. I didn’t know there were charts for head circumference. I didn’t know there was a threshold for what was too big. To me, she looked like a normal baby with maybe a slightly generous forehead.

But apparently there’s a chart for that. And Evelyn was starting to rocket off the page.

So we were referred to the children’s hospital. Just for an assessment. No rush. No stress. Just someone checking things out “to be safe.” We were new parents. We went along.

And then we found ourselves in neurosurgery.

The morning of the appointment, I told John, naively, it should be quick—in and out. We went through the usual logistics of how to manage a quick hospital appointment without paying too much for parking. Without investing too much.

I can’t even remember going into the neurosurgery clinic at the children’s hospital. I thought we were going to see someone who’d pat her on the head, say “Yep, that’s a sturdy little cranium,” and send us home. I thought maybe someone would measure it again and tell me that percentile lines are flexible and subjective and not to worry.

But no. Apparently when a baby’s head starts to outpace the normal range, they don’t send you home to wait and see. They send you to neurosurgery.

That was our first appointment. Evelyn in her car seat, wide-eyed. Me in my postpartum hoodie, trying to act like this was still routine. Trying to convince myself it was all part of a precautionary checklist. I remember thinking, “They’re being thorough, that’s all.”

Dr. David McAuley, chief of paediatric neurosurgery, didn’t really soften the moment.

He wasn’t cold, exactly. Just… focused. Quietly clinical. He looked at Evelyn, then at the referral notes. Measured her head again, then sat back slightly and said, “There’s something going on that’s causing this growth. We’ll need an MRI.”

It wasn’t what I was expecting. Not the tone. Not the plan. Not the next step.

He said there were a few possibilities. Some minor. Some manageable. And then, carefully, deliberately, he said the other possibility.

“There could be a lump in her head,” he said.

That was the first time I felt the floor start to tilt. Not collapse—just tilt.

Because “lump” is such a small word. Unremarkable, even. But in a conversation about your infant daughter’s skull, it hits like a thunderclap.

So we went to the MRI. Everything moved faster than I wanted. Faster than I was emotionally ready for. Which is probably a mercy, because I didn’t have time to spiral.

The results came back. Evelyn had been born with a brain malformation—a birth defect, technically. The fluid inside her skull wasn’t draining properly. Her ventricles—tiny passageways in the brain that carry cerebrospinal fluid—were partially blocked. The fluid that should’ve been flowing smoothly down her spine was bottling up inside her skull. That’s why her head was growing so fast. Pressure. Accumulation. An invisible blockage she was born with, and no one saw it until now.

They didn’t find a tumour. Nor a lump. Not in the scary sense. Just a plumbing issue. A misrouted pipe.

The neurosurgeon said it was common enough. He said it was manageable. That this was the kind of thing they saw often in children’s hospitals. He used words like “straightforward” and “routine,” which in hindsight are pretty wild things to say about brain surgery, but at the time I clung to them like gospel.

He told us Evelyn would need a shunt. A small device, implanted in her head, that would drain the fluid down to her abdomen where it could be reabsorbed into the body. The surgery would be quick. The recovery would be manageable. The results would be long-term.

This is a fix, he said. A solution. We do this, and it’s done. For now.

I believed him.

In June 2018, the day after father’s day, Evelyn had brain surgery. She was still a newborn at eleven weeks old.

The surgery went well. The shunt was placed. I remember seeing her afterward, tiny and drowsy in a hospital crib, with her head bandaged and a monitor clipped to her toe. She looked like a child in a sci-fi movie, like someone who had survived something most people never have to think about. And she had.

The hospital discharged us a few days later. Her head circumference stabilized. The rest of her body caught up. The follow-up scans looked good. She fed well. She smiled. She hit her milestones. We took a breath.

Everyone was calm again. Everything was steady.

Evelyn was okay.

We were okay.

The problem was fixed.

We were told there wouldn’t be much more to do. The shunt would be monitored, but it was expected to last. There was no indication of further complications. We were told this was the kind of thing that required a little attention at first, then slowly faded into the background. A footnote in her medical history. Something she might not even remember.

And for a while, that’s exactly what it was.

We celebrated the recovery. We logged out of the hospital portal. We returned to regular baby life—bibs, toys, naps, first sounds, sleepless nights. I wrapped my own anxiety in logic and data. I told myself that the worst had happened, and we had faced it.

But here’s what no one says out loud in those moments: every diagnosis comes with its own asterisk.

Even the “good” ones.

Even the fixable ones.

Even the ones that come with surgeries that work and smiles from the surgeon.

Because once you’ve had to hand over your baby for brain surgery, once you’ve walked the hallways outside the operating room, once you’ve sat in a hospital cafeteria trying not to Google the phrase “CSF pressure in infants,” you can’t quite go back to the kind of motherhood where every cough is just a cough. You start watching for shadows even in the light.

We were okay.

But I couldn’t stop checking.

I couldn’t stop watching her head.

Measuring. Re-measuring. Comparing photos. Tracking the shape of her skull like it held a secret.

We got through spring.

We got through summer.

June turned to July, then August. I started to let myself relax.

And for a while, we believed the story had ended.

It hadn’t.

But back then, in June 2018, I wanted to believe we’d closed the book. That we were one of the lucky ones. A surgical success story. Problem solved. Cue the healing montage and roll credits.

We didn’t know we were still in the prologue.