Though neither of his parents are particularly tall, Felix was born with extra long limbs. It was mentioned to his parents that this was often a sign of a connective tissue disorder called Marfan Syndrome, but since symptoms often don’t present until the teenage years, a diagnosis wasn’t pursued. About two months later, Sheena had Felix booked in for an appointment with their pediatrician. That day, he’d been fussy and not himself. The pediatrician listened to his heart and quickly called for a colleague to come listen too. Within minutes, she had phoned an ambulance and baby Felix was enroute to emergency at the Alberta Children’s Hospital.

Felix had supraventricular tachycardia (SVT), meaning his heart was beating alarmingly fast and irregularly (240 beats per minute!). Though this can usually be brought under control via IV, it was not working for Felix. Much to his parents’ relief, pediatric cardiologist Dr. Robin Clegg, who specializes in electrophysiology, was working that day. She was able to insert an electrode into Felix’s chest through his nose and tap on the back of his heart, stabilizing the rhythm.

Felix was quickly referred to the genetics clinic at the hospital, which confirmed a diagnosis of Marfan Syndrome as the result of a gene mutation. Marfan syndrome affects all connective tissue in the body, but most severely impacts the heart. Felix’s diagnosis at just three months old is incredibly rare, says Sheena, as most people are not diagnosed until their teenage or adult years. Though it meant Felix had a challenging road ahead of him, the diagnosis also came with a lot of relief. Sheena was so grateful for how quickly the family received answers and that the answers were definitive, as many cases are not so clear. Last June, Felix underwent heart surgery in Edmonton to replace his aortic root, which was twice the size of an adult’s.

Felix continues to be seen by the cardiology, genetics and musculoskeletal clinics and is working with a multidisciplinary team to help with his development. Sheena is so grateful for the Alberta Children’s Hospital, especially Dr. Joyce Harder, “who can explain the worst thing and still make you feel like everything will be okay” as well as Dr. Lindsay Mills, who is incredibly receptive to the family’s thoughts and so collaborative with other specialists regarding the best possible path for Felix. Last spring, Sheena ran the Scotiabank Calgary Marathon to honour her son and raise money for the Alberta Children’s Hospital Foundation.

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