The little girl we see crying in her crib in the Maladie d’amour video is Charlie. Although the touching scene is very real, the indomitable Charlie is usually the picture of happiness.
And yet when you hear more about her condition, you can’t help but get a lump in your throat. Hers is a complex and very serious case. She has hypoplastic left heart syndrome, which means the right ventricle does all the pumping. To compensate, she is on round-the-clock inotropic support to help her heart muscle contract.
Her parents call her “Charlie the Warrior Princess.” She was already a fighter before she came into the world. Her mother, Enya, found out 22 weeks into the pregnancy that the little “nugget” she was carrying had a serious heart defect and that it would take multiple surgeries to keep her alive.
Our world came crashing down. The fact that a child who wasn’t even born yet was being subjected to this ordeal shook me the core. I cried. A lot. It was just so unfair. But I eventually gathered my courage and told Dave, “If this is the challenge life is going to throw at us, we can overcome it. We’ll have to be strong for our daughter and be there by her side every step of the way, no matter where that takes us. I love you. I love her. We love each other.”
Charlie has gone through two surgeries, one when was just 15 days old. Enya and Dave entrusted her to the caring hands of Dr. Suzanne Vobecky. “I gave her a kiss and told her I loved her before they wheeled her in. I was absolutely petrified.”
February 25, 2016. Twelve hours on the operating table, complete with plenty of complications and a hemorrhage. The agony for her parents was unfathomable. It was a day of sheer hell. “We finally got to see her that night. What a shock. Her skin looked blue. But she was alive. Completely knocked out by some strong painkillers. But she was alive.”
The warrior rises
In May 2016, three months after she was born, Charlie saw the world outside Sainte-Justine for the first time. But she would be back. Often. For tests and other procedures. Viruses of all kinds were a daily reality for her. One particularly virulent strain ravaged her little body this past spring. She was medevacked to Sainte-Justine from her home in Abitibi.
Despite several attempts to treat the respiratory distress caused by her throat infection, Charlie went into cardiorespiratory arrest. Her heart stopped for 20 whole minutes.
It was like my guts had been torn out off my body. Like a gaping hole opened up under my feet. I sobbed at the thought of a future without her. My body went limp. It was the worst moment of my life
Charlie was put into a medically induced coma to give her time to heal. When she came to after her breathing tube was taken out, Enya and Dave were overjoyed to see their daughter was as good-natured as ever. She then had to be weaned off her medication, undergo rehab treatments and get ready for a new heart, for which she has been on a waiting list since July. A new heart that could save her life.
Until then, Sainte-Justine is her home.
Love: the most powerful weapon of all
Charlie has never known anything else. Being hooked up to a machine, living in a hospital room, getting poked and prodded – it’s all normal for her. Being sick is part of her life. But so is being loved. And love wins out at every turn.
The love of her parents. Her parents are source of strength. The bond between them is unshakeable. Her mother is as fierce as a lioness, ready to go to any lengths to protect her cub.
The love of her caregivers. Genuine and heartfelt. The kind of affection that makes them honorary members of the family.
The love of everyone who gives to Sainte-Justine to support innovation and foster hope.
And the strength of this little “Warrior Princess,” who draws on an extended network of love that surrounds her and her family.
The Tree of Lights, shimmering with hope for the children of Sainte-Justine
Charlie’s hospital room is full of two things: medical equipment and toys. “Wanna play?” Because despite her condition, her days at Sainte-Justine are filled with happiness. And here is where she’ll be spending the holidays, for the very first time.
What do we want for Christmas? To have all our family here at Sainte-Justine to be with Charlie. And the best gift of all would definitely be a new heart.
Charlie, the Tree of Lights will shine brightly for you – and Santa Claus will be sure to drop by to see you and all your little neighbours. He’ll be as generous as ever. And your eyes will be “all aglow,” Charlie. We promise.
