So yesterday around 4:30 pm, Ava was officially put on the waiting list for a new heart, praise God!! When you are waiting for an organ donation in Ontario you are listed with Trillium, the gift of life network… http://www.giftoflife.on.ca/en/ a non-profit organization that organizes all the donations and recipients in Ontario. They have all of Ava’s information, her weight and length and any other info they need… so if her perfect match comes available, Ava can get a new heart!
Now the thing about being put on the list for a heart transplant is that it’s NOT a first come, first serve basis. You are giving a rating that shows how much you need a heart, so you might have to wait longer for a heart if you are stable, because if there is someone who needs a heart desperately, it would go to them instead. And then the pool of available hearts is very small. A donated heart can travel four hours, whether by air or road, which is NOT a huge area considering that Ontario doesn’t have that many people. Sometimes hearts do come from the US, but not often. So hearts are hard to come by, and I can show you families at Sick Kids that have been waiting for hearts for 10 months and 6 months and it’s frustrating and tough, definitely not an easy wait.
And then there are all the factors that go into matching a donor heart to a recipient. A big factor is size, you need a heart that is the right size of you. Now in a case like Ava’s, her heart is enlarged, so she can take a bigger heart than would normally do for her size, but you can never go smaller than the size your own heart would be. Blood type used to be a factor for infants, but years ago Sick Kids pioneered ABO incompatible heart transplants for infants under 18 months of age, so even though Ava is an O blood type, she can receive an A or a B heart. Another complicating factor is that kids like Ava who have a congenital heart defect often times have blood vessels that aren’t normal. In Ava’s case, her main pulmonary artery was fused with the upper part of her aorta when she had her Norwood surgery; so when Ava gets a new heart, she needs it to come with an intact pulmonary artery and aorta as well. The problem is, if that donor also is also donating lungs, we probably wouldn’t be able to have the pulmonary artery, so that heart would have to go to a baby who didn’t need those extra blood vessels.
So as it was explained to us, the odds of receiving a heart perfect for you is like winning the lottery…. and that is what we are up against. But we serve an amazing God, and we know that if He wants Ava to get a new heart, He will provide one, so all our hope is in Him.
And then there is the heart-breaking part of all this; we know that another family will be going through a devastating loss of a child, at the same time that we are rejoicing that our child is receiving the gift of life. But I like how Jason put it, we aren’t waiting for another child to die, by the time the family is deciding to give the gift of life, their child has already died. And that is something that we have absolutely no control over, nor do we wish it for anyone.
But it certainly has made us look at organ donation is a different light. I understand that if you just lost a child, donating their organs would seem like an extremely difficult decision, but for people on the other side like us, a donation would mean the gift of life and we would be grateful for that gift for the rest of our lives.
So the wait begins, for a new heart for our baby. And even tough it’s going to be challenging times ahead, we still know God has a plan for our little Birdy.