Her name was always going to be Ava.
Before she was born Ava’s parents, Bonnie and Jay Powell, spent every Thanksgiving touring vineyards in the Okanagan.
One particular wine, called Ava, described by Bonnie as beautiful and complex, warmed their senses. The couple would return many times to that Oliver winery that held a special place in their heart.
The untaken pregnancy test was burning a hole on Bonnie’s bathroom counter at 2 a.m. Somehow, she already knew. But Bonnie wanted to definitively shout from the rooftops, she was going to be a mother.
Positive.
Bonnie jumped back into bed and woke up her husband Jay, an English expat. Bonnie says she knew instantly upon meeting him through mutual friends in a downtown Vancouver bar they would get married. They just clicked.
“Guess what? Guess what?” she said with her soft Australian accent.
Jay was half asleep and confused by the excitement in the darkened room. Bonnie watched the baby news wash over him. As he settled back to sleep she stayed up all night downloading pregnancy apps.
The Powells started nesting when Bonnie was 32 weeks pregnant and bought a house in Deep Cove. At 41 weeks, Bonnie refused to be induced. She went the natural route – literally.
“That’s how I went into labour, by hiking Quarry Rock,” she says with a laugh.
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While in the throes of labour at Lions Gate Hospital, Bonnie didn’t know if she was having a boy or girl. She and Jay had a hard time deciding on a boy’s name but “had full agreement on Ava.”
The doctor handed Bonnie her baby and said: “It’s a girl.”
She came out with a lot of dark hair “like her dad.” Promptly, her parents named her Ava.
A parent’s intuition
Sporting a sequin unicorn sweater and a side pigtail, Ava is bouncing around the living room.
The active toddler loves indoor rock climbing and the balance beam at her gymnastics class. And animals. Ava loves animals.
On this early December morning, Ava watches through the picture window as a squirrel scurries along a fence. When there’s an animal around, Ava becomes chatty.
Bubba is Ava’s nickname, a term of endearment for Australian babies.
“Ava, are you a little bubba?”
“No,” she says in act of adorable toddler defiance.
Bonnie shudders to think what Christmas would have been like this year if they hadn’t hounded the doctors.
“It’s one of those things where I truly believe if we hadn’t caught it, something really, really devastating could have happened. Like they literally drop dead.”
A mother’s intuition is rarely wrong.
After Ava started daycare in October 2016 she became chronically sick.
“People just said: ‘It’s a cold. It’s daycare, it’s daycare, it’s daycare – building immunity.’”
But then Ava developed pneumonia and “this dreadful rattle,” audible with each tiny breath. Her temperature soared. For days Ava wouldn’t eat.
The family became frequent flyers in medical clinics and the emergency room. They left with empty assurances.
“Everybody kept telling me she was fine and that there was nothing wrong with her, and I just knew something was off,” says Bonnie.
It was a Tuesday morning.
Bonnie had just returned to work after mat leave. Jay was bringing Ava to another walk-in doctor and mentally preparing to be told nothing’s wrong again.
At the medical clinic in Lynn Valley, the doctor gently placed the stethoscope on Ava’s chest.
A normal heart makes a rhythmic “lub-dup” sound as the valves open and snap shut with every beat.
With Ava, blood was coursing through her wee heart so fast it was making a whooshing sound.
The murmur had eluded other doctors who listened to Ava’s heart with a keen ear. Jay just held his baby girl and tried his hardest to process the doctor’s words.
“You just go pretty numb,” he says.
Jay called his wife and without any preamble blurted out: “Ava has a heart murmur.”
Bonnie immediately burst into tears at her desk in the open office. Panic, fear and sadness ganged up on the new mother and wouldn’t let go. Even to this day.
“It shook us to the core,” says Bonnie, of a parent’s worst nightmare when their child is seriously ill.
While cheery tunes, colourful lights and smiling faces swirled in the background last Christmas season, Ava’s family was on a different schedule.
They saw a barrage of specialists in Vancouver. Ava, at 14 months, bravely endured poking, prodding and blood draws in the sterile hospital setting.
All Ava wanted to do was watch her favourite TV show, Paw Patrol, in the comfort of the family living room in Deep Cove.
Ava’s congenital heart defect was diagnosed on Valentine’s Day – irony not lost on her parents.
“We’ll never think about Valentine’s Day the same way,” says Bonnie.
She learned Ava was born with a hole in between the two upper chambers of her heart.
For each of Ava’s 100-million or so heartbeats while in the womb and the outside world, abnormal veins were draining blood from the lungs back to the wrong chamber of her heart.
All the internal exertion, as her tiny heart worked harder than most, was exhausting on Ava, who struggled with breathing. She had stopped growing and plateaued around 12 months.
Ava needed an operation: open heart surgery.
Those three words hit Bonnie and Jay like a punch to their stomach.
“Your world just stops,” says Bonnie.
Uncharted territory
At home, her parents scrubbed Ava down with special surgical soap for her last bath before the looming surgery.
As she laid her daughter down to sleep in her crib, Bonnie prayed: “My God, I hope this is not the last time I get to do this.”
Emotion was running high the next morning in the heart centre at B.C. Children’s Hospital. Ava’s parents couldn’t explain to their 15-month-old what was about to happen in words she would understand.
They cuddled with Ava in her hospital bed surrounded by scary-looking machines and watched some Paw Patrol.
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Bonnie and Jay slowly let go of their daughter, as the nurse administered medicine to make Ava drowsy. The drug is supposed to minimize the distress on children as they separate from their parents and are carted away towards the bright lights of the operating room.
Ava’s parents were left behind in state of unimaginable fear.
“The surgeon, I will never forget when he left us the day before the surgery … the last thing he said was: ‘No promises,’” recalls Bonnie, her voice wavering.
More well-versed in pediatric cardiology than a mother should be, Bonnie can graphically explain how the surgeon healed her daughter’s heart.
With a steady hand, Dr. Sanjiv Gandhi made an incision in Ava’s chest. He broke open the breastbone to expose Ava’s heart. Then he stopped it. Blood pumping through Ava’s body was sent to a bypass machine, which took over for her heart.
“We handed her over at 7:30 (in the morning),” says Bonnie.
For 300 agonizing minutes on that late winter morning, Bonnie and Jay were left in the dark.
Jay felt claustrophobic holed up in the bleak, small waiting room – mere steps from his daughter’s delicate surgery across the hall. Bonnie sat very still and went into a deep meditative state.
“We didn’t actually do much talking to each other,” she says, of how in those five hours words failed the loving couple.
Like prisoners in a jail cell, the couple was only allowed one phone call. They could get an update on Ava, but not a minute before the two-hour mark of the surgery.
When it was finally time, Bonnie and Jay put in their request with an orderly and waited for a call back from the operating room.
Time passed by at a glacial pace.
“A couple minutes later she (the orderly) called and said, ‘Ava’s doing….’”
Bonnie broke down retelling the story. Jay picked up where she left off.
“She was already off the bypass machine,” says Jay. “And breathing on her own.”
Still, Ava wasn’t out of the woods yet.
The parents clutched a huge “NASA-looking” pager in the waiting room. The pager only goes off for two reasons: to say the surgery is done and all is well, or something went wrong.
Jay and Bonnie nearly jumped out of their seats as the pager buzzed and reverberated off the walls in the close quarters. With those 50/50 odds in mind, the couple waited another excruciating 15 minutes for any news about their daughter.
“Nothing can give you comfort until they hand your baby back to you well and healed,” says Jay.
Dr. Gandhi walked in with a smile and said the surgery was successful. A big exhale filled the room.
At that point Bonnie said to Dr. Gandhi, a stoic man: “I’m going to hug you.”
“And I literally jumped on him.”
Surgery scrapbook
Ava is the picture of health nine months after open heart surgery. That’s the best Christmas present her parents could have hoped for.
The two-year-old was scheduled to take a trip to the “North Pole” to meet Santa a couple weeks ago through Children’s Wish Foundation, but became sick at the last minute. Nothing too serious, all things considered.
Ava still might qualify for a “big wish.” Her mom suspects Ava will want to go on an African safari.
Looking back on their ordeal, Bonnie says Ava is lucky. She learned one in 100 children are born with a congenital heart defect. And while not every one of those kids needs heart surgery, others will undergo multiple procedures.
A scar on Ava’s chest, she calls it her scratch, will one day lead to questions when she looks in the mirror.
Her parents are prepared with a surgery scrapbook. Bonnie has a photo of Ava in the ICU, heavily sedated and laying in her hospital bed, tubes sticking out of her tiny body.
Patient wristbands from Ava’s hospital stay are affixed to the page like concert tickets. On the flip page is stainless steel wire used to sew Ava’s sternum back together.
Tucked inside the book is a poignant poem Bonnie penned for Ava’s surgeon:
“Because of you … There’s the noise of toddler’s happy little feet running through our house. Because of you … From the hallway, I can hear daddy reading bedtime stories.”
Bonnie and Jay go on to thank Dr. Gandhi for sacrifices he makes in his personal life every day to change the trajectory of sick children’s lives.
Gandhi, chief of pediatric, cardiovascular and thoracic surgery at Children’s Hospital, says a significant number of congenital heart defects get picked up in utero.
In other cases, a doctor might not consider a sick child to have a heart defect because it can mimic symptoms of more common conditions, like asthma.
“It’s just one of those things – you need a vigilant doctor,” says Gandhi.
Many parents worry when they hear about young athletes collapsing from undiagnosed heart conditions.
“Kids can collapse unquestionably but it’s usually due to another sort of cardiac problem that’s a lot more rare than the ones that we’re talking about in the scheme of things like Ava had,” explains Gandhi.
He is happy to report that Ava is in the clear and will “live a happy, healthy, normal life.”
Back in Deep Cove, Ava’s parents snuggle a little longer with her on the couch.
“Are you strong?” says her mother.
“Yass,” says Ava.
She’s always had the heart of a lion.