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Twelve days after she was born, experts diagnosed Alicia Ridley with heart failure. The cause was truncus arteriosus, a birth defect of the heart where the aorta and pulmonary artery are fused together.
Dr. George Trusler performed a then high-risk open-heart surgery on Alicia in an attempt to repair the defect. She was just over two weeks old at the time.
"My heart is actually in a textbook," explains Alicia. "In 1986, I was one of the earliest survivors of that operation."
Alicia would undergo three more procedures – including another open-heart surgery – before she was one year old.
Approximately 0.8 per cent of Canadian children are born with a congenital heart disease (CHD). CHD is present at birth, affecting the structure and function of the heart.
One in four children born with CHD have a critical CHD. Children in this cohort, such as Alicia, typically need an intervention within the first year of their life.
'Music and faith have always been a comfort to me'
Alicia would be in and out of hospital throughout her childhood. At nine, she underwent her third open-heart surgery.
"I don't remember much, but I do remember watching a lot of baseball in recovery," she says. "This was 1995, so it was a good time to be a Blue Jays fan!"
The following year, Alicia started piano lessons and discovered her love of music.
"Music has always been a comfort for me," she says. "Growing up in the church, I was always surrounded by music. Music and faith."
At 12, Alicia was diagnosed with scoliosis – a sideways curvature of the spine. She was fitted for a back brace and waitlisted for surgery.
"I needed an MRI and I was so scared," she explains. "I've always had a fear of small spaces, crowds, just anywhere I feel like I can't escape quickly. I've spent a lot of time hooked up to machines – I think that's where it comes from.
"When I went for my MRI, I was so scared I couldn't stay still. I remember my mom telling me we had to get this done. We prayed together, and then I went back in.
"As I was laying there, I started to hear worship music, and I relaxed. I came out and my mom said I was glowing. I asked her and the technician if they heard the music. They had no idea what I was talking about. My mom and I are convinced it was angels that were sent to comfort me."
The scoliosis surgery was a success – but it wasn't without complications. Alicia had difficulty eating, resulting in the insertion of a (gastronomy) G-tube. Recovery was long and uncomfortable, and as Grade 8 graduation loomed closer, Alicia's frustration peaked.
"I wanted to go to my graduation so badly," she says. "The morning of, I took the G-tube out myself. I forced myself to eat something and I got ready. I got my picture taken.
"A few weeks later I went to the ceremony. I had to walk with a cane on stage but I was there."
Transitioning to the Peter Munk Cardiac Centre
Sixty years ago, only 20 per cent of children born with CHD lived to adulthood. By the year 2000, there were more adults living with CHD than children. Today, approximately 90 per cent of CHD patients survive, thanks to the dedication of CHD health care teams.
CHD patients at Sick Kids begin their transfer to UHN at age 15 and fully transition at 18. The Peter Munk Cardiac Centre at UHN is home to the largest Adult Congenital Heart Disease Program in Canada.
At age 20, Alicia met Barbara Bailey, a nurse practitioner (NP) in the CHD program at the Peter Munk Cardiac Centre.
"I connected with Barb right away," Alicia says. "I could talk to her honestly about how I was feeling, about feelings of anxiety and depression.
"She's always there to listen, and I know she has my back."
With her sister in a nearby city, and Barb on speed dial, Alicia completed her BA in Church Music at Heritage College in Cambridge, Ont. After graduating, she was hired as a church pianist, but something wasn't right.
Regular checkups showed Alicia's heart valves were leaking, resulting in severe fatigue. Performing a church service would drain her, and a 10-minute walk would leave her exhausted.
"I couldn't do anything I wanted to do," she says. "I had no energy, no motivation. I could barely make it through dinner, let alone concentrate on work."
In the fall of 2022, Alicia's doctors decided it was time to intervene. A minimally invasive approach would have been ideal, but an angiogram revealed the need for open-heart surgery – Alicia's fourth.
"I was really nervous for this surgery," Alicia recalls. "I knew it would give me more energy but I didn't have any frame of reference.
"The only surgery I remembered was my back surgery, and that was a horrible experience. My anxiety was extremely high."
With the surgery booked for late November, Alicia and her family started their Christmas decorations early, knowing they would be too distracted come December.
'I finally have a new chapter'
Recovery was challenging, but progress was quick.
"Barb had me up and walking every day," Alicia says. "It was hard at first, but after a few days, I noticed a huge difference.
"It was night and day. Before, I would get winded so quickly. After, I was walking around the ward two or three times, no problem."
Near the end of her hospital stay, Alicia found the piano in the De Gasperis Conservatory, just down the hall from her room in Toronto General Hospital. Shereli Soldevilla, another NP on Alicia's care team captured the moment with a few photos.
"Living with congenital heart disease is challenging," says Shereli. "Alicia did so well post-surgery, and it was wonderful to hear her play the piano.
"She's an accomplished musician, and a real inspiration for other young patients living with congenital heart disease."
On her way home, Alicia was astounded at her newfound energy and perspective.
"I remember that drive so vividly, seeing all the decorations and people on the street. I remember thinking, 'I can do this. I don't have to be scared.'
"I could see the path ahead and I wasn't afraid to get there."
Coincidently, Alicia's first post-surgery performance was this past Sunday, Feb. 5, the start of Congenital Heart Disease Awareness Week.
"Alicia's story is interesting because today, it's no longer unique," explains Dr. Lee Benson, Alicia's interventional cardiologist.
"Her story is a reflection on a comprehensive system that has been developed over the last many decades to allow children with critical and complex heart disease to potentially live a full and normal life. It's one of the greatest success stories in modern medicine."
"It's been a long journey, but I finally have a new chapter," says Alicia. "I hardly recognize myself. It's such a relief – to feel like I'm going to be okay.
"And I know that with my family, my church community, and my faith, I can conquer anything that lies ahead."