When the day came that my son no longer needed a heart monitor, everyone was happy but me

This First Person column is the experience of Natasha Chiam, who lives in Edmonton. For more information about CBC's First Person stories, please see the FAQ.

In the picture I don't even remember taking, my husband is standing at the entrance to a pediatric ICU patient room, his head resting on his arm as he leans against the frame of the doorway as if it were the only thing holding him up.

Inside the room were at least 10 people, all doing their part to save our seven-year-old son who had just gone into cardiac arrest.

One of these people, the soft-spoken yet confident senior resident doctor, is up on the hospital bed doing chest compressions on our boy, his large gloved hands covering the whole span of my child's chest.

I remember standing about five feet behind my husband. I can't recall whether I was breathing or crying. I'm not sure if it was one nurse or two holding me up, but I clearly remember not wanting to sit down.

As I watched the medical team work on my son, I was dissociating.

I was visualizing the trajectory of my child's life splitting in two and focusing on the most terrible of those futures. I saw myself planning my child's funeral, telling his five-year-old sister that she had lost a brother, and me, failing horribly at a life without him in it.

Fortunately, providence — and the steady hands and minds of every single health-care professional in that room — were focused on the future with my child surviving.

The pediatric ICU team successfully resuscitated him and put him on extracorporeal membrane oxygenation (ECMO), an advanced therapy that does the work of the heart and lungs when a patient's own organs are too sick or weak to function on their own.

Our son remained on ECMO for six more days. His body, the multiple machines it was connected to and the medications being pumped into it worked in concert to fight the streptococcus infection that led to septic shock and multi-organ failure.

Today, more than 10 years after it all happened, I feel caught between remembering and moving on.

When you look at my healthy, broad-shouldered son — now taller than his father and more man than boy — the only visible reminder of what he endured is a three-inch, jagged and faded scar at the base of his neck. It's the mark left by the rushed incision made by the pediatric cardiovascular surgeon when they connected him to the heart-lung machine.

About six months ago, I got a call from the pediatric brain injury clinic at the Glenrose Rehabilitation Hospital in Edmonton. Because he also had a small stroke while on ECMO, a side effect that happens to about 10 per cent of patients, my son has been monitored by the program for the past decade. He was assessed at each major cognitive or emotional transition in his life: post-illness reintegration to elementary school, elementary school to junior high, junior high to high school.

He was two months shy of his 18th birthday and the clinic was calling to discharge him. He was aging out of the program.

I know this is a good thing — he hasn't needed further services from the clinic for years, was recently given a clean bill of health from his pediatrician and has been accepted into the program of his choice at the University of Alberta.

He is ready for this next transition.

So then why, after I hung up that call, did a heavy sense of dread settle deep in my belly? As if the giant net beneath our carefully choreographed trapeze act of health and survival had been yanked away without warning?

I realize now that the trauma we lived through left a lasting imprint on my mind, body and soul. And as much as I want to move forward, I'm struggling to let go of the medical services that have surrounded us for so long, offering a sense of control, comfort and reassurance in a world that once felt so fragile.

When my son was in the intensive care unit, he was continuously monitored by a machine that measured and displayed his every breath and heartbeat. My own heart would beat in time with the reassuring flashing numbers on the screen.

When the day came that he no longer needed the monitor, everyone was happy but me.

How was I supposed to just sit there without the constant reassurance of those blinking numbers, knowing that only a week ago, his tiny heart had stopped?

Those nights at the hospital, without the monitor to count either of our heartbeats, I would lie awake on the blue vinyl cot wedged between my son's bed and the wall, squinting in the dark to watch his chest rise and fall, holding his hand to feel his pulse.

I know there is truth to the statement "the body keeps the score" because I feel it deep within my whole self.

In the years afterward, nothing would set my heart racing like hearing another parent casually mention a round of strep throat sweeping through a classroom.

In our house, even the slightest fever — anything above 37.5 — is treated swiftly and seriously. And I will be the first to admit to a level of hypervigilance about both my kids' mental health that may be borderline obsessive.

While it may not be the healthiest way to live, there is a kind of comfort in knowing the score and what my trauma triggers are.

Also keeping score is the part of my mind that pipes up every now and then and tells me to stop being so dramatic. Because my son survived. He no longer needs intense medical care. He is healthy and strong. He is an honours student.

He surprises me daily — sometimes with his interest and opinions about world politics, sometimes with a random hug out of the strange blue yonder of adolescence. By every possible metric I could imagine, he is thriving.

My brain knows I should feel gratitude for how far he has come and how lucky we are to have had the care and services from an incredible health-care team. The rational part of me knows it's time to adjust to what is. My body, on the other hand, still remembers and reacts to what was.

All this "discharging" from the pediatric services feels like being thrown into a free fall — no plan, no contingencies, no safety net — and the last time I felt like this was the day the nurses turned off his monitor all those years ago.

Here I am again, having to trust in his recovery. That my healthy and thriving child's transition to adulthood is more of a launch and less like plunging into an abyss.

I know I'll get to the trusting part eventually.

Until then, as long as my not-so-tiny boy lives under my roof, there will always be a part of me that needs to periodically peek into his room at night, squint into the darkness to make out his silhouette and listen for the sound of his breathing.

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