The Mark of a Survivor

Cordelia at 6 monthsCordelia has a four-inch scar that runs along the middle of her chest. Some might see it as an unwelcome blemish but what it really is, is a mark of a fighter and a survivor.

Before she was even born, Cordelia was diagnosed with transposition of the great arteries, a congenital heart defect (CHD) in which the two main arteries – the aorta and pulmonary – are reversed. As a result, her heart was incapable of delivering oxygen rich blood throughout her little body.

At one day old, Cordelia had an operation to create a hole in her heart that would allow some oxygenated blood to circulate until her care team could perform open heart surgery to switch her arteries to the correct position. She had the second surgery at just five days old.

Had she not had the nine-hour arterial switch operation, Cordelia simply would not have survived. However, she is now three years old and thriving. “Cordelia is a little firecracker. She’s energetic, expressive and artsy,” says her mom Elisa. “You would never know that she has a heart condition.”

Cordelia visits Children’s Hospital, London Health Sciences Centre (LHSC) yearly for her cardiology appointment. Her health care team takes a photograph of her heart using an echocardiogram and measures the electrical activity of the organ with an electrocardiogram (ECG).

“We are so fortunate to have LHSC right here. They have a lot of knowledge and technology to diagnose and support many different paediatric heart conditions,” says her mom, adding she wants other parents going through similar situations to know that they aren’t alone, especially during February which is Heart Month. “Transposition of the great arteries is usually a manageable defect.”

You would never know Cordelia has a heart condition.Approximately one in every 100 children is born with a CHD; it is the most common type of birth defect. Encouragingly, more than 90 per cent of children with CHDs are surviving into adulthood. Sixty years earlier, the survival rate was about 20 per cent.

“Without funding for the research and advancements we would never be where we are,” explains Elisa. “That’s a big part of Cordelia’s story. She’s able to live this sort of ‘normal’ life because of how much has changed.”

Although there have been great advancements in the treatment of CHDs, more work needs to be done. There are approximately 100,000 children living with CHD in Canada and yet, we still have limited insight into how this type of birth defect arises.

 

At Children’s Health Research Institute (CHRI), two teams of researchers are working with passion and dedication to improve heart health for children with CHD in our region and beyond.

• Drs. Tom Drysdale, Quingping Feng, and Kambiz Norozi are conducting basic science studies to develop a greater understanding of the genetic and developmental origins of CHD, with the ultimate aim of preventing CHD or developing new methods of early diagnosis of CHD

• Dr. Norozi is also working with Dr. Luis Atamarino-Diaz to run a cardiopulmonary laboratory where they use stress testing to assess the function of a child or youth’s heart, lungs and metabolism, and to evaluate whether physical activity will improve their long-term heart health

CHRI is located within Children’s Hospital and is the third largest hospital-based research institute in Canada dedicated to child, youth and maternal health. 105 scientists and associate scientists focus on the causes, cures, long-term effects and prevention of childhood health challenges, aiming to provide tangible outcomes that result in enhancements to care, therapy and children’s overall health and well-being.

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