Liam’s Story

The left side of Liam’s heart was so small when he was born that it was almost as though he had arrived in the world with half a heart.

The defect was detected while he was still in utero. His mother Katie was seven months pregnant when Liam was diagnosed with severe hypoplastic left heart syndrome (HLHS). HLHS accounts for seven to nine per cent of all heart defects diagnosed within the first year of life. In Liam’s case, the condition was extremely severe.

When his parents, Katie and Kevin, met with the cardiologist at SickKids before Liam was born, they were told there were three options for their son: the baby could forego treatment and receive only compassionate care until he passed away, they could put Liam on a waiting list for a heart transplant, or he could undergo a series of surgeries to try to rebuild and repair his heart.

Katie and Kevin knew the first option was not right for them. They also felt uncomfortable with the idea that another baby would have to die for Liam to live if they were to wait for a heart transplant.

After deciding to go with the series of heart surgeries, Katie’s obstetrical care was transferred to the high-risk team at Mount Sinai Hospital in Toronto from the family’s hometown several hours away. Just 20 minutes after his birth, Liam was whisked away to nearby SickKids.

Each year, one baby in 100 is born with a heart defect. More than 21 per cent of them are diagnosed at less than a month old. SickKids performs approximately 85 per cent of all the paediatric cardiovascular surgeries in Ontario. Liam was in expert hands.

He had his first open-heart surgery when he was just four days old. While the surgery was a success, the days that followed tested Liam’s strength. Once, doctors had to bring him back to life. Liam even suffered a stroke. Yet again, he pulled through.

In the years since Liam’s ordeal began, he has had several additional surgeries. He quickly recovered from the most recent one to finally close the hole in his heart. Now a bubbly, active four-year-old, Liam is stable, though doctors continue to monitor his health. If his heart shows any sign of trauma, he may need more surgery. It’s likely he will need a heart transplant one day.

Liam’s parents are taking things one day at a time. Katie and Kevin are deeply grateful for the lifesaving care provided by the doctors at SickKids. “Liam’s journey has given us a whole new appreciation for life and for our family,” says Katie, who recently gave birth to her third child, a second sister for Liam. “We will do everything we can to give him a fighting chance.”