Arthur’s triumph of the heart
“I’m okay, just save his life.”
Though a blur, Jennifer remembers saying those words to a nurse last summer as doctors frantically tried to revive her infant son at an acute care hospital where his heart stopped beating.
She remembers the flurry of activity – doctors and nurses rushing in and out of Arthur’s room. She can still hear the sound of the heart monitor that eventually fell silent.
In a daze, Jennifer and her husband, Jorge, thought they had lost their son. But after a series of shocks and CPR, Arthur’s heartbeat returned. Immediately after being revived, he was put on life support and placed in a coma for two days to keep his organs stable.
“It was so hard to see Arthur like that...those were the worst two days of our lives,” said Jennifer. The following day, he opened his eyes and looked up at his overjoyed, but worried, parents.
Arthur’s being alive is nothing short of a miracle, but his battle is far from over. And he’s already had such a tough road.
Rare heart defect
Soon after his birth in August 2016, Arthur was diagnosed with Tetralogy of Fallot, a rare, complex heart defect. It’s caused by a combination of four heart defects at birth that affect blood flow through the heart. In addition, Arthur has Pulmonary Valve Atresia, which means tissue formed over a heart valve that’s meant to be open.
Arthur was two months old when he was first admitted to hospital where he had to undergo four surgeries. The cardiac arrest happened soon after the fourth operation.
The surgeries and cardiac arrest took their toll. While in acute care, Arthur was hooked up to several machines, including breathing tubes that affected his vocal chords, leaving him practically unable to make sounds.
“He only makes sounds when he cries, and we hear a tiny bit when he laughs,” said Jennifer.
And because his heart stopped for such a long period of time, Arthur suffered brain damage that’s affected his mobility.
Holland Bloorview instills hope
Four months after waking from his coma, Arthur came to Holland Bloorview. “On his first day, he couldn't stop smiling and looking around,” said Jennifer.
For the next three months, Arthur took part in physiotherapy, occupational therapy, speech language therapy and music therapy.
And when he wasn’t in therapy, he was playing in the hospital’s playroom. He loved the playroom’s musical toys and would often sit on a giant bean bag, captivated by all the musical sounds. “The staff were absolutely amazing and caring and made us feel safe,” said Jennifer.
She clearly remembers the day when her mindset changed from fear and doubt to hope. A physiotherapist was working with Arthur, when he suddenly lifted his head on his own for about 30 seconds. Jennifer’s heart burst.
“I was in tears,” she said. “That was the first time I saw Arthur move that much without any help. I felt like he was telling us to believe in him…that he was capable of doing more than we could ever expect.”
After that breakthrough, Jennifer and Jorge continued to be amazed at how the hospital’s staff turned therapy into fun games to help her son grow a little stronger and more mobile.
Now back home, Jennifer and Jorge help Arthur do his physio exercises every day, and now her heart swells whenever he smiles, which is often.
“He’s still unable to sit on his own or walk, but the exercises are helping,” said Jennifer. “He can now move his hands, arms, legs, head and feet. Arthur is so much happier…he’s been through so much, now he just deserves to be happy.”
“We didn't have much hope when we arrived because doctors first told us he was never going to move again,” she added. “But Holland Bloorview has shown us he’s able to do so much more.”