February 1, 2013
What's the point?
Josh is clearly a blessed little boy, just read this blog and you will know that as his parents we feel he has and is receiving the best possible care through Sick Kids hospital in Toronto. He has already survived 5 years longer than he should have and he's only 5 years old. So the question that begs to be asked, why the need to raise awareness for CHD (congenital heart defects) at all? What's the point?
This month I will make it my mission to help you understand why I feel it's my job to help raise awareness, and more importantly I hope to get your help. My request is simply this. Help me get the word out, share the posts, email them to friends, tweet them, hook them up with the Path, post them on Facebook. There is a serious lack of knowledge surrounding this defect, and it's costing lives.
I have said this before, but I feel one of my main jobs as the parent of two boys is to see them 'safely' into their futures. What I have discovered on this journey of understanding Joshua's heart and medical care is that though he is blessed now to be in a beautifully designed system that cares for his every cardiac need; this will not be the case when he is released into adult care at 18 years of age.
With the advance of medicine in the last number of years the kids who are born with CHD are surviving into adulthood (obviously great news!), and so the care of Adult CHD patient is very young in it's development. In many ways this is a baby system, and I don't want anyone to lose their child (because no matter how old they are, they are always your child) to a system that is flawed, by lack of funding, research and staff.
Let me break something down for you:
12 Canadian children are born each day that have some form of CHD
180,000 estimated Canadians (adults & kids) are living with CHD right now
100,000 estimated Canadian adults are living with NO program equivalent to that provided for children or people with acquired heart disease.
There are only 5 regional facilities that have been identified as 'regional center of excellence' (with CHD specialists)
There are only 22 Cardiologists in all of Canada who have been specifically trained in the field of adult congenital heart defects
Pretty much sums up my concerns right? How can I do my job as Josh's Mum properly if I don't do everything in my power to see those numbers change before he reaches 18 years old. What good is it to help him arrive at 18, only to lose him into an adult system that isn't ready for him?
As the month progresses you will learn more about the issues surrounding the adult system, the needs, the areas of concern, and the ways that we as a community can help.
In the world of social media, where you will share a funny picture, an ad or contest without thought or hesitation I ask that you take a moment to share this as well. Help me, help Josh and the 12 babies born today with CHD, help the 100,00 adults in our country who are not receiving the care they need in order to live long and healthy lives. The faster we raise up as a nation and ask for a better system, the more the youth heading into the field of medicine learn of this desperate need, the more the adults with CHD learn about the defect they have, the better the chances for change.
Thanks for your help.
Happy Heart Month!