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I don't want your pity, just to retell our story.

Imagine a world where a zipper scar is recognised for the bearer being a #CHD hero and what that really means.
When I tell someone about Elijah's heart condition (Tetralogy of Fallot a severe congential heart defect) I tend to guess their reaction.
After four years we tend to be met with the same response.
One that is slightly uncomfortable, one that sees them struggling to find the words after we tell them that we watched as our six month old baby was wheeled away into theatre, not knowing if we would see him alive again.
Perhaps a glimmer of relief that it isn't their child that will face struggles, future surgeries, restrictions and life long appointments.
We tend to be met with sympathy for our situation, which is greatfully recieved.
Some have a relative or a friend they know that CHD has also resided in so have an insight into what our lives are like.
Some ask questions which I jump at the chance of answering.
Asking me questions about Elijah's condition means I am spreading awareness, educating others about CHD.
Something that up until four years ago we didn't even know existed until it chose my son, and changed out lives forever.
Some change the subject.
Many will say 'I'm sorry'.
I have always struggled when people pity us.
Even when I used to take Elijah to baby group and I was the only NICU (Neo Natal Intensive Care Unit) Mum in the room, I could see the pity in people's eyes and I stopped going.
I don't want to be pitied, or have someone feeling sorry for us.
I wanted to be seen as just another mum, not a mum to an ill baby.
Yes, CHD sucks and the fact it happened to my son is a hard pill to swallow.
But for the most part we have a fairly 'normal' life compared to many.
Instead of pitying us, I ask one thing.
Tell our story instead.
Go on and tell your friends, family, neighbour or Babs on the till in Asda.
Tell them of CHD, that it affects 1 in 125 babies, that it is one of the biggest killers in children.
That many will not know the signs of heart failure to look out for and 1000 babies go home with an undiagnosed heart defect every year.
Or what you should ensure the sonographer checks at the twenty week scan rather than it only being seen as a gender reveal oppertunity.
For the words we have come to use on a daily basis to become part of everyday conversation.
This isn't about making our story (which is just one of so so many) deemed as more important than the others but it is to begin to spread awareness.
To begin to normalize CHD so everyone knows what it means and what it stands for.
Be honest if it wasn't for reading this blog right now would you have known what CHD is?
Long ago they relied on word of mouth to tell stories and experiences, to pass on information to the next generation.
We now have the power of social media but I've watched children die awaiting a heart transplants despite the post being shared hundreds of thousands of times.
I see the parents of children trying to raise funds for life changing surgery for their child ignored over a meme.
To make a splash in the sea of FB, Insta or Twitter you need to be selling something, have a powerhouse of influencers behind you or have the money for sponsored posts.
I don't have any of those things, I only have the power to share my experience and hope you pass it on.
That CHD is normalized as much as it can be.
For expectant parents to know what to look for, that people recognise the signs of heart failure.
That more attention, funding, devlopment and support is given to finding a cure for CHD.
That heart parents aren't pitied, they are empowered and supported.
Take our story and pass it on, whether it be a like, a share, a tag or just in passing with an old friend in a street.
If they go on and pass it on, and it carries on then perhaps they is hope that one day we do take back control of something that has taken control of our lives.

Elijah was born full term on the 18.9.14 after a straightforward pregnancy.
12 hours later he began turning purpley/blue and regained a pinky colour very quickly again.
He did this a few times infront of a nurse and admitted to the neo natal intensive care unit.
Upon examination and after a scan he was diagnosed with Tetralogy of Fallot a congential heart defect.
Elijah had numerous structural abnormalities wrong with his heart including a narrowing valve which pumped back deoxygenated blood causing the cynatic epsiodes and a hole which would require surgery to repair before his first birthday or else he would die.
He wasn't allowed to feed for nearly 4 days and we only held him again day on day 3.
For 6 months we watched, worried and panicked over every little detail of Elijah's life.
At 6 months old he underwent open heart surgery at Great Ormond Street.
This surgery was a success and Elijah is now a happy and healthy little boy who is under the care of the Great Ormond Street Cardiologist Consultants, and will be until he is transferred to the adult clinic.
We are looking down the barrel of a future surgery for another valve replacement depending on how Elijah grows and his body copes.
The first twelve months of Elijah's life felt as though they were taken from us.
It impacted my mental health massively and I was diagnosed with Post Traumatic Stress Disorder.
We are the some of the lucky ones.
The ones who get to see their child start swimming lessons, to learn to read and start school in September.
Others aren't so lucky and this is why we must start a conversation about CHD.
To tell our story and continue to do so.
You will find many heart parents who speak often about their child's condition.
That bring it up in conversation frequently, sometimes it's all we can talk about.
Because this is our lives and we want to protect others from what we have gone through and by retelling our story then that is just a small step in doing that.

For more information in spotting heart failure in babies please click here, and to check out Think HEART campaign click here.


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