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According to the , congenital heart disease (CHD) is the world’s leading birth defect, affecting about one in 80 to 100 children born in Canada. Calgary’s Emma Kirk, 7, is one of those children, and her family is sharing her story with the world.

Emma was born with a narrowing of the aorta and a hole in her heart that required two separate surgeries — the first at just seven days old — to fix. 

According to Janine Kirk, Emma’s mom, dealing with the surprise diagnosis in her newborn was life changing. So much so that Kirk, a local actor, director and producer, was compelled to share her story in a biographical film, , that she produced, directed and plays the lead role in. 

Film based on personal experience

Filmed in teaching areas at the University of Calgary’s , A Broken Beat is an emotionally gripping, realistic drama that explores what families of children with CHD face.  

“I went through a roller-coaster of emotions,” says Kirk of her family’s experience. “It’s scary seeing your child wheeled into the operating room and not knowing if you’ll see them again. You wonder, ‘Why is this happening to us?’”

Emma is Kirk’s second child, but the family’s experience with CHD started well before Emma was born. In fact, it started while Kirk was pregnant with her firstborn, Lucas. 

“I went for my ultrasound, and they saw a shadow on the images and were worried that he might have a heart condition,” says Kirk. “I had to have an emergency C-section, and Lucas spent two days in the NICU before we received the good news that everything was fine.” 

Relieved, the family had no reason to believe they would be confronted with the topic of CHD again, particularly when, during Kirk’s pregnancy with Emma, the ultrasound came back normal, and the birth went well.

Tests revealed CHD 

But, shortly after bringing Emma home, Kirk and her husband noticed their newborn wasn’t very alert and wasn’t feeding well. They had a scheduled appointment that day to have Emma checked and brought it up with the nurse who was doing Emma’s check up. 

The nurse felt Emma’s femoral pulses were very weak and sent the baby to the , where Emma received several tests over several hours. An echocardiogram, administered by Emma’s cardiologist , MD, PGME'19, revealed the narrowed aorta and hole in Emma’s heart. 

“That’s when we found out she had CHD and needed surgery right away,” says Kirk, adding Emma was put on a flight the next morning to the in Edmonton where she received corrective surgery at just seven days old.

A bright future for Emma

Still fragile, Emma received a second surgery at just three months old. She spent some further time in hospital, where she received her post-surgical care. Happily, surgeons were able to repair Emma’s heart, and, at seven, she is active and happy, with a prognosis of a long and active life. Although Emma may need future surgeries as her heart grows, today her cardiology visits are limited to once every two years. 

Vorhies says Emma’s story is unique, as only a small proportion of infants with CHD are diagnosed after delivery. 

“Today, thanks to improvements in technology, most cases of CHD are found during pregnancy rather than after a baby is born,” says Vorhies. “This changes the journey for families. Knowing in advance allows parents to learn about their baby’s CHD with the medical team, develop an understanding of the surgeries needed and gives parents the opportunity to build a birth plan that supports the care needed for their baby and family.” 

Advancements in care also mean that the majority of those born with CHD can live long lives and enjoy the same quality of life as kids born without CHD. 

CHD takes emotional toll

Despite these improvements in prognosis and earlier diagnosis, knowing their child has CHD takes an emotional toll on most families, says Vorhies. 

“Managing the diagnosis and taking care of a child that is so fragile causes a lot of stress,” she says. “It can make families question their parenting skills, and, if there are other children, leave them wondering how to balance their attention between their children.” 

Vorhies, who follows CHD patients from birth to age 18 when they graduate into adult congenital care, says patients like Emma also must navigate coming to terms with their heart condition and the challenges of managing their CHD as an adult. 

Supports are available

Fortunately, there are numerous resources and supports for children with CHD and their families, both within the health-care system and in the community, including , a charitable organization dedicated to helping families cope. 

On Feb. 24, A Broken Beat will be screened at Calgary Central Public Library as part of Science in the Cinema, presented by the and the . Attendees will also have a chance to ask their questions of an expert panel that includes Kirk, Vorhies, and adult congenital specialist, , MD. Learn more and register .