Can you tell us about what led to Evanne needing her first, and second heart transplant?
"It was determined at my first ultrasound that something was severely abnormal with the development of my baby's heart. I was monitored very closely with weekly ultrasounds, several defects were detected and continued to be detected as the baby and the heart developed. Over three of the anomalies were very rare, and all were very severe. She was given a zero percent chance of survival without a heart transplant. Evanne was listed when I was 36 weeks pregnant with her. She was born naturally, two days after her due date. With major medical intervention, she was able to wait until she was five weeks old which is when she received her first heart transplant.
On June 29, 2012, Evanne had a heart attack. It was determined she had lost 80% of her heart function due to Transplant-Related Coronary Artery Disease. She had a pacemaker/defibrillator put in to assist heart function. A week later, Evanne suffered another heart attack and her heart was being fully paced by the pacemaker. She went through several tests and was determined to be classified as highly-sensitized due to her first transplant and was given a 4% chance of receiving a second transplant, but she was listed and received a heart two weeks after being put on list."
What was the day like when you received news that there was a heart match for your daughter? Can you touch on what those emotions were like?
"We got the page in the middle of the night, both times. The first time I was at the Toronto apartment I was staying at near Sick Kids hospital and I slept through the pager TWICE. I had grown so accustomed to the pagers in the hospital that I thought the sound was part of a dream! When I finally snapped to reality, I could barely dial the phone I was so shaky. It was ridiculously surreal, utter disbelief. I mean, you hope and pray it will happen but it isn't until the moment it actually DOES happen, that you realize the magnitude of the situation. The realness of it all. Evanne's first heart wasn't actually a blood match. Her first heart transplant was an ABO incompatible heart transplant. It was discovered that infants under one could receive hearts from any blood type. It was an infant heart, which was what was needed.
The second time, I was staying in the hospital with Evanne. The nurses came in to wake me up and tell me the doctor was on the phone to offer a heart for Evanne. Again, disbelief. I thought it was a cruel joke the nurses were playing (because that made more sense than a heart being available). I couldn't wait to tell Evanne in the morning. She was SOO excited!!! We had made the experience as positive as we could for her so she wouldn't be scared when it came to transplant time. I was of course petrified but optimistic. Evanne was a miracle once before and we knew she could do it again!"
Having seen the miracle of transplant so closely, how important is organ donation and discussing one's decisions to donate to family and friends?
"Having conversations about organ donation is extremely important. The power of storytelling is key to spreading awareness and knowledge. Being a transplant family, it is easy to think everyone is transplant aware and it seems to be an easy choice to be a registered organ donor, but through conversations it is very evident that not everyone acts on their *should*. Being on the receiving end of organ donation, I can't imagine having to make such a powerful decision in such an agonizing state of mind. Evanne was saved TWICE because of these difficult conversations. Logan Boulet from the Humboldt Broncos was an organ donor because he made his decision known by having the important conversation and shared his wishes with his family. Imagine how many other legacies could have carried on if organ donation had been a conversation."
What would you like to say to the medical teams that are so vital to the success of transplant in our province and in your own circumstance?
"We have been "lucky" to have been treated across three different provinces at three major Children's hospitals, Sick Kids in Toronto, the Stollery in Edmonton and BC Children's hospital. BC Children's hospital is our home away from home, and not in a negative way as BCCH has never stopped caring.
The medical teams across the country have been incredible in making make this journey less scary. Many people we have met have become friends (Evanne was even a flower girl at one of her Sick Kids nurse's wedding!). This is a lifelong journey, one with many ebbs and flows. I am extremely grateful to have such a knowledgeable, caring team of medical professions across the country helping to maneuver this path."
What is your perspective on BC's milestone of 50 years of donation and transplant?
"50 years?! That is definitely wild! I can't imagine how many changes and new discoveries have come to light during these years! We were just shy of eight years since Evanne's first heart. Her second transplant surgery went considerably quicker than the first, in spite of having major complications. I had feared they hadn't done the transplant as it had gone so quick. The cardiologist informed me it was because they didn't do transplants "like that" any more! Eight short years and research had already made improvements to heart transplants! We sign up and take part in any transplant-related research, it is so important; we need to see more advances in the next 50 years."
