By being a, “heart mom”, we get to see a lot of amazing things that happen on the 4th floor of Sick Kids. The staff – doctors, nurses, OT’s, dieticians, child life specialists – they all play such a huge role in making incredibly scary situations actually seem managable. Luckily, behind them, is a group called Cardiac Kids, a volunteer group that focuses on raising funds for the Sick Kids cardiology wing. They focus on providing funds for the cardiology nursing programs which support the incredible nurses on the 4th floor – easily the best in Canada!
Beyond nursing, Cardiac Kids also works to support cardiac kids and their families and they really aim to do this through CHD awareness. One of the projects they’ve been working on is a Cardiac Kids blog: a group of heart mom’s who will rotate blogging about life with heart issues. The blog posts won’t necessarily focus on just hearts, but about life overall and what it’s like to balance both the amazing and hard parts of a life with CHD.
I was honoured to be included in this group of mom’s. 45% of kids with Down syndrome are born with some sort of congenital heart defect, so it’s something that affects the DS community at large but I find that it’s also something that people assume is just part of the Down syndrome package. When Jess and I first heard about Lily’s heart condition we fell victim to that mentality; we assumed that it would all work out okay because some kids with Down syndrome have heart issues and it’s just a quick surgery and it’s repaired. Lily’s PVS diagnosis immediatly changed that, but I also don’t think that we could have lived through her surgery and recovery and not had that experience change our perspective. Beyond everything else that happened, those initial days of sitting beside Lily while she was in the CCCU, worrying about when her sternum would be closed, wondering when she would come off of the ventalator, dealing with fevers that spike and O2 sats that drop unexpectedly, it changed us completely and we understood, completely, that without the incredible medical intervention, Lily would not be with us.
So, if you want to take a peek at our first post, an introduction to Lily’s story, you can see it here! If hearing her story helps or brings awareness to even a couple of people, then it’s a story that we’re happy to share.