LIFE: Brugada syndrome, part two. Anna Spargo-Ryan
When Anna Spargo-Ryan discovers she and her family are predisposed to a rare and deadly heart condition, she knows what to do – get on to Google and terrify herself.
Your children can have Sudden Unexplained Nocturnal Death Syndrome.
The specialist is a man too jovial for his beige office. He immediately recognises me as someone who panic-searches for information; I have come to the appointment with just enough to be a danger to everyone.
I say, “I read that in Japan they just call it ‘sudden death syndrome’.”
“Yes!” he says brightly. “That is what it causes.” He checks my heart with his stethoscope. I resist the urge to jokingly wonder if I have one at all. I fill the time with leading questions based on my Google-fed micro-facts and mixed-up presumptions.
“You know a lot,” he says, bemused. “But remember to be discerning.”
I will not remember to be discerning. Instead, I will remember him saying, “A past history of fever and fainting puts you at high risk.” I will remember holding my daughter when she was three years old while she went limp and blue in my arms, and the way my hands shook on the buttons as I called an ambulance. I will remember the way her body burned as her knees collapsed in the middle of a Blockbuster, and the long line at the emergency room.
I will not remember to be discerning. I will take in every skerrick of non-peer-reviewed speculation from every website I can find.
Each night, when my daughters get into their pyjamas and have their skin all soft and clean, we chat for a few minutes. Usually they say things like, I’m feeling a bit sick or I think I’m getting a headache – a set-up for when they try to get out of going to school the next day.
When that’s done, I hug them and I say, “See you in the morning.” I make them say it back to me. They mumble the way teenagers do. “SEE YOU IN THE MORNING,” I yell, and they go to bed and dream about K-pop, or whatever, and I think about how I’ve defended them from night-time yet again.
On a Friday I take them to have their hearts monitored in a weatherboard house. We sit in plastic chairs and wait our turn. They say they’re not nervous, but their questions betray them: Will it hurt? Can you come in with me? When will we find out?
A strip of paper delivers your child’s heart function from a machine. It comes in waves and spikes. The muscle you created with your own body, the same beats you heard with your ear pressed to their tiny chests. The nurse prints it out in a small dim room and hides it from you. No, you’re not an armchair cardiologist. No, you don’t know how to interpret the results. No, if we give you a copy, you’ll Google it and scare yourself.
I am a pro, I say. The only thing I know is how to Google and scare myself.
I decide to book in all of us for CPR training. The internet tells me this is the only course of action if you wake and find a person in cardiac arrest.
Start cardiopulmonary resuscitation as soon as possible.
Place your hands, one on top of the other, at the bottom of the breastbone; push down one-third of the depth of the person’s chest; 30 compressions followed by two breaths, aiming for about 100-120 compressions a minute. A good way to keep the rhythm is to think of the Bee Gees’ song “Staying Alive”. Ah-ah-ah-ah. Remember to reflect on the irony throughout.
Without CPR, it takes three to four minutes for a person to become brain dead. CPR does not guarantee that person’s survival, but it creates a chance where there would have been none.
Start cardiopulmonary resuscitation as soon as possible.
Don’t let the whole night go by without starting it. Sit beside your loved one while they sleep. Lie there until your eyes are swollen with fatigue. Watch their nerves twitch with their dreams. In a quiet voice, reminisce about the times you ate picnics at the beach and the times you bought golden jonquil bulbs and the time when you were born, and your slippery eel body was safe with their arms around it.
If you drift off and their heart stops, start cardiopulmonary resuscitation as soon as possible.
My younger daughter sends me emails from school. “Have you got the results yet?” she asks. “Not yet. Try not to worry,” I tell her. “I’m not worried,” she writes. “Me neither,” I reply.
We are liars.
In the afternoon, I call the medical results number. My whole body is quaking. My fingertips sweat. The nurse needs a minute to find our records. It is longer than any other minute there has ever been.
The phone line quietens, just a low chatter in a corridor. “Are you there?” I say.
My heart is slamming against the bones that protect it. It is a propeller about to lift me into space. It constricts, fights, pukes. What does it know?
The nurse clicks whatever nurses click to reveal fates. Finally, she says, “The note says they are all normal.” By some miracle, against the odds, it appears as though for now none of us have inherited it. My brother, my sister, my children have normal ECGs.
It is only Mum who carries it with her, listening for the monsters in the night.
My mum sleeps while Dad’s radio plays, upstairs in a room with a balcony that overlooks the park. Her bedcovers are made of material printed with petals, bees, fish. She leaves her glasses on the bedside table. Downstairs she always has fresh flowers and she keeps expensive individually wrapped ice-creams in the freezer, in case her grandchildren visit. She texts in emojis. She sends me things like, How is my beautiful girl? and So proud of my girl.
When I was a teenager, we fought every single day. At night, I pull out my phone and text her.
I imagine her hazel-grey eyes flicking across her screen as she reads my words. I want to type, See you in the morning. I want to demand it. But somehow, in this upside-down world, it no longer seems fair to insist. Instead I type, Love you lots.
I wait, watchfully.
After a minute, her reply comes: Love my girl!!! Brugada syndrome is a rare, distinctive but oftmissed wave on an ECG. It rises, then it falls strangely and dips at the bottom (“coved ST segment elevation >2mm in >1 of V1-V3 followed by a negative T wave” ). The heart is structurally normal but the electrics are dodgy. It is different from other heart disorders because it’s still present when you’re resting or asleep, not exacerbated by exertion. It doesn’t cause chest tightness, breathlessness, shooting arm pain or any of the other signs the TV tells us to watch for. It has absolutely no impact on a person unless they have an episode.
The heart just beats and beats, and one day it might stop. And in that regard, it is like everything else.