Aug. 20, 2023, Hayley Cooney and her husband experienced two life highlights: their first wedding anniversary and the birth of their first child, Isabel. Their daughter, delivered at Sechelt | shíshálh hospital weighed just under nine pounds and had what appeared to be a heart murmur.
According to a report released Feb. 4 by the Heart and Stroke foundation of Canada, one in every 100 babies is born with some degree of heart condition or disease.
Within Isabel’s first month of life, the family travelled to the heart centre at BC's Children’s Hospital in Vancouver to have that murmur checked out, where her parents were faced with terrifying news. Their only child had Tetralogy of Fallot (TOF), a rare condition affecting 1 in 3,500 children. It involves four heart issues: narrowed pulmonary valve, a hole between the heart's lower chambers, a misaligned aorta and thickening heart walls, the result of the organ overworking. She would need open heart surgery within six months.
In January 2024, she would undergo that procedure. Fast forward just over a year from that surgery date and Isabel is a red-haired, grinning toddler with an outlook for a normal life, according to Hayley. “And she’s a Leo, so we think she is going to be pretty fiery,” the 30-something Gibsons mother told Coast Reporter.
Their heart disease journey
Asked about the day the TOF diagnosis was delivered, Hayley said she and her husband, who had moved to the Sunshine Coast from Vancouver in 2020, “had plans to meet up with friends” after what they expected would be a brief appointment at BC's Childrens’ Hospital.
“That first appointment started with a few tests for Isabel but when we were brought into an office and there were three people in there, we knew something was not right,” she said. When the medical staff shared the test results, Hayley said she and her husband “were in complete shock. We were first-time parents trying to figure out the normal things, feeding, sleeping, diaper changes… and then to hear that our baby needed open heart surgery within the next six months, and potentially more surgeries was completely devastating.
“The team at Children’s Heart Centre was amazing in explaining things to us, but we likely only retained about 10 per cent of what was being said because we were in shock. We were sent home with a big binder that was put together by the Children’s Heart Network, the charity that supports families like ours.”
Over the following weeks, the new parents reviewed as much of that information as they could to prepare for the upcoming surgery.
“We weren’t really losing sleep because as first-time parents of a newborn, we weren’t sleeping anyway” Hayley recalled. The following months were a series of “dozens, and dozens and dozens of doctors’ appointments… every week several appointments and off-coast at least once a month."
While travel to the Lower Mainland was a complicating factor, Hayley said being a Coast resident meant her family benefited from regular home visits from a community nurse and their doctor. “It felt like there was a lot of coordination. That was definitely appreciated,” she remarked.
Fall 2023 brought new challenges. It was a season with an increasing incidence of respiratory syncytial virus or RSV. To protect Isabel from infection, the family decided to isolate in their home. The infant’s first Christmas season was one without visits from extended friends.
“As the weeks progressed Isabel’s blood oxygen level started to decline. She had a weak heart so she was very tired and she struggled to gain weight,” Hayley explained. That required the baby be shifted to a specialized feeding formula and that her intake be carefully recorded and reported to her physician.
Surgery day and beyond
Recalling the day of the surgery, Hayley said it “was the most terrifying day of my life."
“Nothing prepares you for handing over your five-month-old daughter for a six-hour surgery and just praying it all goes well.”
The surgery, performed by Dr. Muhieldin Ahamad was successful. The surgical team were able to save Isabel’s heart valve and the infant rallied so quickly post-surgery she was released from hospital three days after it was completed.
“It is amazing how resilient babies are,” the young mother recounted.
It is yet to be determined if the youngster will require further surgeries. Hayley stated, “it will depend on how she grows and how the surgical repairs hold up, but our surgeon has told us Isabel will live a normal life." She attributes that “amazing outcome” to the advances of modern science and medicine, noting that if Isabel had been born with TOF in the 1950s or 60s, her life expectancy would have been about three years.
Hayley has participated in a national child heart disease network resource parents’ program since shortly after Isabel’s diagnosis. While once on the receiving end of advice and support from parents she was linked with, she is now giving back, letting others facing childhood heart disease know about things that helped in her child’s journey.
“Not a place that I thought I ever would be in, to be able to provide positive feedback and support, it's like giving back and paying it forward,” she stated. “I can’t speak highly enough of the care we received. Our health care system in Canada has its flaws and shortcomings, but the treatment we experienced at BC Children’s Hospital was world class."
What’s next for the young family? Looking forward to a fun summer and awaiting the arrival of Isabel’s first sibling in August.
“And just enjoying being normal," Hayley said. "[TOF] was something that consumed us but we feel very lucky."
Editors note: the name of the heart surgeon has been corrected from a previous version, with our apologies.
