Aidan's Story

On an early Friday morning in Winnipeg, Aidan came into his family’s world.  By Monday, he was in Edmonton’s Stollery Children’s Hospital Cardiac Centre, undergoing his first open heart surgery.

“When Aidan was born,” said Joni, his mother, “he was immediately taken away for care.  It was four hours before I got to see my newborn son.”

Aidan was born with several heart defects, and those initial hours were needed to stabilize him.  After a whirlwind discharge from Victoria Hospital, the family was off to Children’s Hospital, and then to Edmonton.

There were further surgeries at four days, five months, and a year.

Aidan was 10 months old when an ultrasound revealed cancer had taken over his right kidney.  He would have to battle the cancer into remission, before the doctors could address a lingering heart issue: his valve transplant had contracted a fungus.

At 16 months, with the cancer in remission, Aidan was back in Edmonton for additional heart repair.

His recovery would not be as successful, with Aidan suffering a stroke after surgery. The right side of his body was affected, causing both physical and cognitive challenges that would last the rest of his life.

“Aidan had already started to develop a strong vocabulary, and he was crawling.  Now, he had to relearn these skills, working with occupational and physiotherapists.  He used to be right-handed, but now uses his left.  Memory loss is also a challenge.”

Starting Kindergarten at 5, Aidan was a month into his classes when he acquired an endocarditis, a bacterial infection in his heart.  He would spend the majority of the school year at home, with visits from school staff to help with lessons while he recovered.

“We aren’t really sure what ‘normal’ is,” said Joni.  “It has been a whirlwind.”

Joni joined the Circle of Hearts, attending their Support Meetings.  Later, she would join their Board as a Treasurer, and help them become a registered charity.  Variety, The Children’s Charity of Manitoba, has supported Circle of Hearts and provides time at Variety’s Camp Brereton.

“We have close to 70 campers at capacity.  Sparrow, our youngest daughter, was 3 or 4 weeks old during our first family stay.  The camp has really been a blessing.  They have activities that are both fun and suited to the campers’ personal needs.”

Aidan, now 15, has made lifelong friends from camp. “They relate to each other, as they have shared experiences that other kids just don’t have.”

What is next for Aidan?  “He had surgery last year, and we are expecting another within the coming year.”

– Written by Chris Mahussier

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