Hardwood Lake – When Wesley Behm was only 11 days old, he became Canada’s youngest heart transplant recipient.
Last week he died aged 36, with his family by his side, having lived what his family described as a beautiful life full of love for others. He loved nature and his home in Hardwood Lake, and he had the knowledge he was a living miracle with the hope that miracle would also impact the lives of others through greater medical knowledge on heart transplants.
“He showed us how to love with your heart,” his sister Pamela Lovelace said. “Follow your heart. Be there for everybody.”
“I think of him as the most humble person,” his sister Jennifer Keller said. “He always wanted family gatherings. He would play with all his nephews and nieces. Age did not matter.”
When he was born on July 22, 1989, the youngest child and first son of Sharon and Brian Behm of Hardwood Lake, Dr. Joe Cybulski at St. Francis Memorial Hospital immediately noticed something wrong with his heart. He was stabilized and transferred to Ottawa and at 11 days old, he received a heart transplant operation by Dr. Wilbert Keon and a team of specialists from both the Ottawa Heart Institute and the Children’s Hospital of Eastern Ontario (CHEO). It was a miracle chance and something which had not been successfully done in Canada before.
The operation took seven hours and although there had been a possibility initially of repairing his heart, it was quickly discovered this could not happen, so Dr. Keon told the family little Wesley would be receiving a heart transplant. It was the first of its kind in Canada. It was the beginning of the unknown because this surgery in infants was still so radically unexpected. The donor child was 18-months-old. Wesley weighed about eight pounds when he had the surgery. Any prognostication on life expectancy with an infant heart transplant was too unknown, but nothing held this little boy back.
“He defied the odds on everything he did,” Pamela said. “It never held him back.”
At eight weeks old, he was discharged from the hospital in Ottawa. Because of the anti-rejection medications, he was also more susceptible to viral infections such as cold. The anti-rejection medications were also hard on his little body and the consequences led to complications later, especially on his kidneys.
Wesley’s dad, Brian had his own logging business and the community rallied to help the family in those days, organizing fundraisers, including a hymn sing at St. Stephen’s Lutheran Church and a Christmas lighting campaign in front of the public school.
After those early days and the national spotlight as the youngest heart transplant recipient in Canada, Wesley and his family settled into life in the small hamlet of Hardwood Lake. Wesley was like any Valley boy, playing outside, loving animals and having fun with family and friends.
When he was 13 his heart began to fail and he received a second transplant. The anti-rejection drugs he had been on all his life had been so hard on his body, and he began dialysis as a teenager at 16.
While people would remember the boy who was the youngest heart transplant recipient, Wesley did not like talking about his heart transplant or celebrity status. He just wanted to be treated like anybody else.
“He did not want people to ask him how he was,” his mother, Sharon, recalled.
Instead, he liked to talk about what people were doing and had an interest in things around him and in others.
“He was one of a kind,” she said.
His biggest passion was driving his skidder. His family noted any chance he had he would be in the bush on his ATV or sled or driving around, visiting someone.
Wesley had a lot of experience in hospitals, ever since he was an infant, and he was very patient and respectful with health care staff, his family recalls.
“He would never give anyone a hard time in the hospital,” Pamela said.
Wesley was able to live at home in Hardwood Lake all his life, enjoying the outdoors, helping his family, riding ATVs and being in the bush with his dad. He was able to do dialysis at home in the evening, and the family did training to help him.
“The convenience of home made it easier for him,” his mom said.
He was on dialysis for two decades.
Although he had had two heart transplants, he lived life as normally as possible. He did have a heart valve put in his heart to help him later on but usually it was just annual visits to the cardiologist and other doctors. In the last year things were more challenging, but his death was not fully expected when he died last week.
“He was in and out of the hospital, but he was so strong,” his mom said.
When he received that heart transplant in 1989 much was unknown, including the impact of some of the anti-rejection drugs.
“The medications were so strong,” his mom said. “They did not know that at the time.”
The impact of the heart transplant was never far from the Behm family. While Wesley didn’t want it to be the focus of his adult life, when he was a little boy his sister Jennifer recalls how proud he was of the heart transplant.
“My husband came in when he was around four or five years old and he showed him the video of the heart transplant,” she recalled with a laugh. “He said, ‘do you want to see a movie?’.”
For Wesley as he grew older it was not about him though, but about what medical science could do to help others.
“He would say, ‘I am helping history with their search and everything’,” she said.
Sister Stephanie Dumoulin called him her hero.
“He showed me to push through the hard times in my life,” she said, noting he had been through so much himself.
Pamela remembered how he loved to be outside and be with people. She said when she thinks of him, she thinks of his example to live life fully despite any challenge.
“Enjoy life; don’t stay in the house,” she said.
Wesley lived at home with his mom and she knows he worried about her since she had lost her husband Brian in 2009. This loss was hard on Wesley, she recalled.
“He was the best son,” she said. “He was kind. He worried about me more than he worried about himself. He had a lovely smile.”
“He fought to the end,” Pamela said. “He was a fighter all the way.”
He is survived by his mother, Sharon, sisters Jennifer (Casey), Pamela (Steve) and Stephanie (Randy) and nephews and nieces, as well as great-nieces. The family received friends on Tuesday at the Heubner Funeral Home, followed by a funeral service. In lieu of flowers, they asked for donations to the Ottawa Heart Institute or the Rotel in Ottawa.
