If not for the kindness of a very generous soul I wouldn’t be here today. My husband wouldn’t have a wife and my family wouldn’t have a mother, sister, aunt or grandma-to-be.
I was born in 1966 with a congenital heart defect called transposition of the greater vessels — or blue baby for short. Lack of oxygen gave me a bluish colouring. I was baptized and given last rites when I was two days old and then I had my first heart surgery.
Two years later I had a pioneering operation called the Mustard procedure developed by Toronto surgeon William Mustard. I became one of the first Canadians to have this ground-breaking operation and survive. But although the surgery saved my life it didn’t assure me of a long one. My heart was never strong and, even with medications, I grew up with limitations.
Being the youngest in a busy Catholic family of eight kids (six boys, two girls) I was definitely babied. But if you ask any of my siblings the “heart condition” didn’t stop me. I played street hockey, baseball, football and basketball. I ruled the basketball court when it came to “21” — just ask the neighbourhood boys.
I knew I was not like other kids but every time I was told “no” or told something wasn’t a good idea, I went ahead and did it anyway.
Growing up, I had many “sleepovers” at Sick Kids Hospital and surgical procedures I can hardly remember. By the time I was a young adult, doctors began cautioning me about the risk to my heart of having children. I shrugged and told them I planned to have three, two boys and a girl. God and I discussed it when I was 12 (probably during one of my sleepovers at Sick Kids). I completely believed that I’d be a mom, and that’s exactly what happened — two boys and a girl, the first Mustard patient ever to have a baby.
I raised them to be independent because I never knew when I was going to leave them forever. I prayed that I would live to see them all graduate and, hopefully, someday even hold grandbabies.
For 50 years, every time I was asked what I wanted for my birthday or for Christmas I would state: A new heart!
I was in my late 40s when I developed congestive heart failure and, when my heart function decreased to 10 per cent, doctors recommended a transplant. That scared the wits out of me and my family. One brother almost collapsed when the doctor casually said the t-word while he was visiting me in the hospital.
During the rounds of testing to become eligible for a spot on the transplant list and during a long waiting period, the doctors performed various procedures to keep me going.
I was a test case, becoming the first ever Mustard patient implanted with a three-lead biventricular pacemaker, and the first blue baby to be hooked up to a type of battery operated external pump called a left ventricular assisted device (LVAD).
I quipped I was part Iron Man and part Bionic Woman. I named my LVAD George, and my husband joked about sharing our bed with another “man” for 18 months.
When finally I was placed on the transplant list I learned there is a big difference between making the list and actually receiving an organ. It is a sad reality that the number of patients needing an organ greatly exceeds the number of donors. All I could do was wait and pray. I waited four years.
I was told that due to the medical complexity of my situation following a lifetime of surgeries, transfusions, medications, childbirth and other factors, finding a matching donor would take a miracle.
But miracles happen. Mine came in the form of a wonderfully thoughtful person who, at some point in their life, registered as an organ donor. Defying all odds, this person was a perfect match.
When the call came, I was stunned and then ecstatic. In September 2016 God heard all of our prayers and I received the greatest gift of all, a new heart. After living 50 years with a bad heart, I knew everything was going to be OK. I would be here to meet my grandkids. The first one is due in March.
The identity of organ donors is kept private for the sake of the family left behind. However I was able to offer my condolences and express my deep gratitude to the family through the Trillium Gift of Life program.
Now I’m a registered organ donor. My sister Kathy gave me a t-shirt which says, “Don’t take your organs to Heaven, Heaven knows we need them here.” How true.
Everyone should register as an organ donor and explain their wishes to family. To register, go to beadonor.ca. You just might save the life of some other mom or grandma-in-waiting.