Owen was born sept 25,2012 with an unbalanced AVSD in Saskatoon. We had found out at our 20 week ultrasound that Owens heart was small and that there was a hole in it, requiring Owen to be born at RUH with access to the NICU. At 2 days of age Owen was transferred by air ambulance to the Stollery in Edmonton where his heart team was deciding if Owens left side of his heart was big enough to be a two ventricle heart or if he was going to have a one ventricle heart requiring the Norwood procedure.
Owen had his first open heart surgery when he was 11 days old to repair his AVSD and to create 2 valves – the mitral and tricuspid valves. The team decided that his left ventricle was big enough to function as a two ventricle heart. After a few months in the NICU in both Edmonton and Saskatoon, Owen was able to come home but couldn’t eat on his own so he had to be fed through a feeding tube in his nose.
Feeding was a struggle; Owen wouldn’t breastfeed or take a bottle. He was fed through the NG tube until his next surgery.
Owen had his 2nd open heart surgery in August of 2013 when he was 11 months old to repair the two valves that they had created, as they were leaking. Owen recovered well from this surgery but we knew repairing the valves was only a short term solution.
Owen had his 3rd open heart surgery just shy of his 3rd birthday in August of 2015. Dr. Rebekya replaced his mitral valve with a mechanical one. Owen is now on Warfarin to prevent any blood clots from forming on the valve. As a result of where the electrical system is in the heart, when the mechanical valve was placed it cut off the electrical system telling his heart when to beat, placing him in complete heart block. Owen had surgery for a permanent pacemaker a week later. This was a long hospital stay for Owen and he wasn’t really well when we left the hospital. He wouldn’t eat, started losing weight and was throwing up. After numerous echo’s postoperatively, Owens heart team in Saskatoon (Dr. Kakadakar, Dr. Pharis, and Dr. Pockett) found that there was a large VSD that was created accidentally at the time the mechanical valve was placed.
Owen went for his 4th open heart surgery 2 months later in October 2015 when he was 3 years old to fix the VSD that was created during the previous surgery. The hole was the size of the Dr. Rebekya’s thumb nail. Owen recovered really well after this surgery and was surgery free for 2 years (the goal was supposed to be no more surgeries until he was a teenager to replace the mechanical valve with a bigger one).
During the Summer of 2017 at one of Owen’s echo appointments Dr. Kakadakar saw that there was a build up of scar tissue under his aortic valve causing him to have higher pressures in his heart. If this was left untreated the narrowing would cut off the blood supply going to his heart and body.
Owen had his 5th open heart surgery in December of 2017 when he was 5 years old. Dr. Rebekya removed a large amount of scar tissue and also some heart muscle to make this area bigger to prevent any further narrowing in the future. Owen was only in the hospital for 4 days after this surgery as everything went well and he was recovering nicely.
Owens next anticipated surgeries will be a day surgery in 5 years to replace his pacemaker battery, and another open heart when he’s a teenager to replace the mechanical valve with a larger one. If the narrowing does return under his aortic valve he will need open heart surgery sooner to place a mechanical aortic valve to make the area bigger.
We currently travel to Saskatoon for Owens echo’s and pacemaker checks every 4-6months. We also make a trip to Edmonton once a year to meet with KIDCLOT who manage Owens warfarin. We have a point of care machine at home where we monitor his INR every 1-2 weeks and self adjust his warfarin.
Today Owen is thriving, he is 5 years old. He is in nursery school, Ukrainian dance, Gymnastics and baseball. He enjoys swimming, biking, climbing and tormenting his brother and sister. When you look at him you’d never know what he has been through.
Thank you to our heart team in Saskatoon – Dr.Kakadakar, Dr. Pharis, Dr. Pockett, Dr. Robinson, Marie, Angela, and Bob!