Challenges · Heart Kids · Ponderings · Things I Have Learnt

The Heart Kids connection

Public notice – this is a long one!  Once I started writing I realised I had quite a lot to say on the matter.

Writing yesterday’s post about the upcoming Tri, I stopped to think for a moment about my motivations for doing such a thing.  And today I’ve had a very strong reminder of one of my reasons.

Aside from the desire to challenge myself, prove I can do this, get fit and have some fun along the way, some of the inspiration was a little less directly personal, but integral to this decision which might’ve seemed a little random when first announced.

I referred to Heart Kids yesterday, and as some of you may be aware, it’s part of my job to let people know how awesome heart kids are and how much Heart Kids NZ deserves our support. Today I have been reminded once again just how very real the challenges facing kids with congenital and childhood heart defects (CHD) are.

Because every morning over the past few weeks that I’ve been swearing and sweating at the gym and then congratulating myself for my efforts, a mum in a very different room full of very different machines has already been up for hours.

She’s been sitting by her baby’s pod in PICU (Paediatric Intensive Care Unit), watching every slight flutter of his chest as he struggles to get air. His tiny heart is working overtime to do its thing.  She’s caught the sheerest moments of sleep, waking with a start each time she doses off, scared to look at the monitor and feeling guilty that her body has betrayed her by forcing her to nap.  And each time she wakes, she has to check that this isn’t just a terrible dream.  She is in Starship Children’s Hospital, and they are both a long long way from home.

Today is a slightly better day than yesterday, Mum says.  Yesterday was not a good day, not a good day at all.  But he made it through the night, and that is all that matters right now.  The medical team is doing all they possibly can, and one thing I know for certain is that we are so lucky to have the very best medical team available.  They’re as good as you can get, and so that at least can be some minuscule comfort to parents as they hand their babies over for surgery and care.

Dad has been up to Auckland this week, and his older brother too, for a short visit.  They can’t stay for longer.  There is money to consider, and jobs.  Bills.  School.  Keeping some semblance of Life As They Knew It going, so that they have something to come home to.  His big brother should not have to be dealing with this.  His life is now also disrupted.  He’s old enough to know a little about what’s going on.  To ask questions.  To worry.  To feel that similar guilt, that his tiny brother is going through this fight and there’s not much he can do to help.  His heart is fine, and that doesn’t seem fair.

But his brother is a fighter.  That fact, and the fact that they are not alone as they stare down into this terrifying abyss of the unknown, are the only factors they can hold on to right now.

This little heart warrior has already made it through open heart surgery. He was only three days old at the time.

His heart is the size of a strawberry.

His chest has been cut open, he’s been wired and tubed and ventilated and medicated beyond what you’d think his tiny body could cope with. He’s still struggling to breath, his heart is struggling to pump blood around his little body.  And even though this first round of surgery has done what it needed to do to get him this far, it’s not the last, nor the only, time he’ll be taken from his parents’ arms and wheeled into theatre.

Public awareness of congenital heart defects is pretty low.  Believe me, it’s a unwelcome fact of my daily professional life.  If only people knew just how prevalent and complicated heart conditions are for our little people, Heart Kids NZ would never struggle to get support.

Some basic facts:  One in every hundred babies will be born with a congenital heart defect.  In NZ that translates to 12 babies each and every week.  Over 450 open heart surgeries alone will be performed on some of these tiny hearts each year.  That’s not including the procedures and treatments happening every day on kids to patch up their hearts enough to keep them going.

CHD is the number one cause of death for infants and children.  That’s one of the hardest facts to deal with – and we are reminded of it each time a heart angel dies.  It happens more often than we like to think about.  The incidence of CHD is four times greater than that of childhood cancer. There is no cure, nor a lot of evidence pointing to specific causes or ways to prevent it. Sometimes these tiny hearts just don’t develop the way they should.

One of the biggest issues Heart Kids NZ faces when it comes to awareness and public recognition of CHD and the need for ongoing support is the fact that often heart kids look completely well.  Some of the tell-tale signs, the blue lips and fingernails, the overly rosy red cheeks, aren’t that obvious or they aren’t associated with every heart defect – and there are over 40 different types.  Sure, when the kids are shirtless there is often a giant zipper scar running down their chest, or the ‘sharkbite’ scar, wrapping around their side.  Those can be pretty noticeable.  But day-to-day?  You might not know.

And so you have this tribe of heart warriors running about, getting on with their lives as only kids can do.  They’ve often been through so much in their short years that they just factor it in as their ‘normal’ and try their hardest not to let it slow them down.

This is great, but it doesn’t mean they’re fixed.  Or that their heart defect won’t have profound impact on their lives.  Their abilities.  Their decisions and their opportunities.

These warriors run when they can, and that snapshot is what the general community usually sees.   We don’t see the worry when they’re old enough to know when their heart isn’t working as it should.  We don’t get to hear their cries when they hurt.  Or hear the quiet sobs as they pull at their tubes when in a hospital bed, confused as to what’s going on.  We don’t see the frustration when they can’t keep up with their classmates.  Or the pain when other kids hurt them with words because they’re different in a way that their classmates can’t quite understand.

We don’t witness the sheer terror parents face when they first find out their baby has a CHD.  We don’t see these parents trying to work their way through a medical maze of new terms, new words, new circumstances. We don’t see the loneliness, or the worry.  The sleepless nights and the fights, brought on through exhaustion and fear.

But like this new heart mum currently sitting by her baby’s bedside is learning, these kids and parents are not alone.  There is a network of love and support holding them up.  Heart Kids NZ is a huge part of that.  And I am proud of that, and proud to be able to do a small part to help.  In my case, this help means raising awareness and funds to allow Heart Kids to reach even more heart families.  Provide even more support.  And ensure no child or parent, no family, has to take on the unknown alone.

I realise this has been a long and rambling post.  And I haven’t exactly explained what heart kids have to do with my decision to do this upcoming Tri.  But it’s pretty simple.

Each time I complain about panting on the treadmill, or mince out of my seat after a particularly tough weights session, I need to remind myself that I am lucky.  My body allows me to do these things.  To run, to swim, to cycle.  To push myself.  Many heart kids won’t ever be able to do this. Their lives are different because their hearts are different.

And so, to put it bluntly, I feel that to NOT take this on when I can and many others can’t is, quite simply, a little ungrateful. And if these heart warriors have taught me anything, it’s that life is short and to be cherished. And that way too often what we get in life is not what we signed up for. So we need to take on the challenges we have control over and choice in, so that we are stronger when we have to face the ones we didn’t ask for. The Southern Man and I don’t have kids, but I don’t think you need to be a parent to empathize with what these families and children have to go through.  And with such incredibly high incidence rates, I know it is simply blind luck that none of the small people so directly important in our lives have been affected by CHD.

The mum that I mentioned earlier?  She wouldn’t wish what they’re going through on anyone.  She’s also one of many many parents, her family one of thousands, who have no choice but to keep on taking it day by day.  I know a little about her story because she shared it, just to get the emotions out.  I don’t presume to have any insight into what they’re going through, but as a fellow human, my anatomically well-formed heart breaks for these little people who’s hearts haven’t done the same.  But it also swells with pride at what they take on and what they accomplish.
Which means that my achievement on Saturday will be in a small way taken on in honour of these warriors.  So please think of them and their parents, their family, their siblings and friends, next time you hear anything about Heart Kids.  They’re pretty damn special.
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P.S. An update for August 2015.  It’s Heart Kids Awareness Month here.  Please take a second to check out this video.  Am pretty damn proud of the team who made it.  And ridiculously grateful to them too.  Please help raise awareness by sharing it far and wide xxx
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