Coved-shaped waves (Part one)
When I was 17, on a cool May morning, the phone rang while I was leaving for school. That wasn’t unusual in itself, but when I answered, my grandfather’s deep voice boomed out.
He had never called before, and he never called again. It was always my nanna’s voice, pitched and cheerful. His beat out like a warning bell.
“Is your mum there?” he asked. He was crying.
I eavesdropped on the line. My uncle and his wife had hosted a dinner party for friends the night before: they had eaten good food, drunk good wine, and when the festivities ended, they had gone to bed.
Then, my uncle had died suddenly in his sleep. He was 39 years old.
Early in the day – too early, the wrong kind of early – my mum sends a text. I’m at your front door! Smiley face. And immediately, another: I have a baguette! Half-dressed, I take the bread from her. It is still warm. I wait for her to rush off, as she usually does, but she pushes past me and sits at the kitchen table.
“Hi?” I say. She’s unfolding some paper. My children are still asleep.
“I have to talk to you about a medical issue,” she says, as though they are not the most terrifying words that exist. “But don’t worry, it’s not about your dad.” This is always her way, to simultaneously reassure us and diminish herself.
She had been to hospital a few weeks earlier with chest pains. Afterwards, I had collected her myself and carefully packed her into my car while the angiogram bruising spread across her skin. She seemed in good spirits. Her arteries had been clear, she said at the time; there was nothing wrong with them.
Technically true. She is a lawyer, after all.
Now she backtracks. There is something wrong, actually. She knew this then, when I picked her up. She had let me drive her home and complain about my own minor problems, and she had listened and helped. Don’t worry, you’re okay, I’m here. This is her way, too. To always make space for other people.
She sits in my kitchen, at a table she bought for me. “It’s no big deal,” she says, which is a lie. “It’s nothing, really. I didn’t even know if I should tell you.” She turns the paper face-up to me. It is a mess of crests and falls I recognise as an echocardiogram.
She points to a place where the line shifts. “It’s called Brugada syndrome.”
I don’t know who taught me to say, “See you in the morning.” Even as a child, well before my uncle died, I was fixated on it. Paranoia told me if I didn’t tell someone I would see them in the morning, I wouldn’t. Over time, the obsession evolved – it would have to be the last thing I said to them before they went to sleep. When I moved out of home, I would call my parents and shout it down the line.
See you in the morning. See you in the morning. A demand. Promise me I will see you in the morning.
Many things can take you in the night. There are monsters under the mattress, in the wardrobe, scratching at the window. A house might land on you, or a loose tree branch. In the dark you might eat a poisonous spider, sleepwalk into a bear trap, be taken by a wild dog. The earth might be peppered with ancient rocks from an asteroid belt.
The Brugada syndrome was described in 1992, in patients presenting with recurrent aborted sudden cardiac death (SCD) and a typical electrocardiography sign of ST-elevation in leads V1 to V3. [Macedo PG, Brugada J, Leinveber P, et al.]
The year I moved to Melbourne a man broke into our house while we were sleeping. He stole a laptop, a wallet and both of my parents’ cars. When the police found Mum’s sedan in a Carlton drug bust, there was a gun inside. A fake gun, but still. I invented a face for that man, and I saw it every night before bed.
It was later shown that patients die of ventricular tachycardia or fibrillation, often during sleep. [ibid.]
Brugada syndrome also comes in the night. In the Philippines they call it bangungut: to rise and moan in sleep.
See you in the morning. Seeyouinthemorning.
“Don’t search for it,” Mum says. I have eaten the end of the baguette without realising. “I did. Just don’t.” My phone blinks back from my hand.
Brugada syndrome: a rare inherited cardiac arrhythmia syndrome that is characterised by a ‘coved-shaped’ atypical right bundle branchpattern on a 12-lead ECG. [Melbourne Heart Rhythm]
Brugada syndrome: a potentially life-threatening heart rhythm disorder that is sometimes inherited. [Mayo Clinic]
Brugada syndrome: also known as Sudden Unexplained Nocturnal Death Syndrome. [Wikipedia]
I ask her every question I can think of. What does it mean? Are you in danger right now? Do I have it? Why didn’t you know about it before? Does it hurt? Are you scared? Are you scared?
In retrospect, the doctors say, there’s a very high likelihood my uncle died from Brugada syndrome. It is inherited in an autosomal dominant manner: you only need one abnormal gene from one parent. The average age of an “episode”, a nice word they use to describe your sudden massive heart attack, is 40.
There is no cure. The treatment options are having a tiny defibrillator implanted in your chest, or “watchful waiting”. The only symptoms are fainting and death.
I will be 37 next month. “Try not to worry,” Mum says, touching my arm again – her skin is so soft, like wax paper. “There’s a 50:50 chance you don’t have it.”
And then: “I’m sorry.”
My uncle’s death is ever present in our family. He was handsome, gregarious, bold and fervently loved. It was so unexpected, so inexplicable. I think about him often. I think about him as I drive to the heart specialist. I think about him as I call my ex-husband to gently explain that our daughters might have inherited a sudden death disorder.
“We’ll worry about it if we need to,” he says. I have never done this in my life.
Because I am an anxiety-stricken mess of a human, I’ve had many ECGs. I’ve run into hospitals and shrieked about chest pain. I’ve explained to my doctor the fluttery, breath-catching palpitations. I’ve scrubbed the sticky residue left by dozens of leads, worn 24-hour Holter monitors and carried the reports around with me for reassurance. So, there is, the specialist explains, a good chance someone would have found it by now.
But it’s genetic, and not everyone with the gene has the disease. You can be a carrier. Even if you don’t have it, your children can.
This is part one of a two-part essay. The conclusion will appear next week.
This article was first published in the print edition of The Saturday Paper on Nov 16, 2019 as "Coved-shaped waves (Part one)". Subscribe here.