Skip to main content

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.








Comments

Popular posts from this blog

Dear Elijah, on your fourth heart day

Elijah the heart hero never letting anything stop him. Today  is your 4th heart day. It's 4 years since we took you down to Great Ormond Street for open heart surgery. It seems to have crept up on us again. Another whole year has passed but it hasn't changed how I feel about that day. Some have said that oh, by now surely you should have gotten over it after all it's been 4 years. The answer is I don't think I ever will. I have been thinking a lot about that day, where I signed the consent forms for them to take you and operate on you. To either save or take your life. That day was the worst of my life, the unknown certainty of whether you would come back up again. I held you as they put you to sleep. They gave me your dummy as they took you from me and laid you on the operating table as if you weighed nothing. I couldn't even kiss you goodbye in case it was the last time. That's why I won't ever get over it and those who have been in the

The time Fajita night resulted in having a baby in a bath.

The newest Cockerill Do you all remember my ever so optimistic natural birth plan? You can read it here. However, spoiler alert, it didn’t happen. What did happen was something no one was expecting. Wednesday the 5 th July… a mundane sort of day spent cleaning the house and doing the weekly shop. With Greg going back to work the next day I was determined to make sure everything was ready for when this baby arrived! I was three days off my due date and still hadn’t had one single sign this baby was imminently coming. I had been receiving messages from quite a few people asking if baby was here yet. I was getting fed up as everything I had tried to induce labour failed miserably and every morning for the last two weeks I woke up disappointed I wasn’t in labour! I gave up, walking didn’t help, pineapple made me sick and I was beginning to tire of the raspberry leaf tea. This baby was staying put. In the evening I put Elijah bed, and we began to settle down for the eveni

The one with Elijah's heart surgery.

We were back. April 22-28 2015, a year ago this weekend. In just two short weeks since we last went down to London. We had to go down the day before and check in and have another blood test. As all of the forms had been signed last time, we were out again within an hour or so. Back to the same family accommodation, in a different room and with a lot less luggage. Something felt different this time, although I didn't want to believe it was going ahead in the event it was cancelled again, deep down I knew it would be. The morning of the surgery I knew how I would feel as we had been through this all before. I didn't want to go out for a meal so we ate in the hotel room watching ch5 rubbish after Elijah went down in the travel cot. Its odd that through the whole pre admission, cancelled op and the actual operation I can remember what shit we watched on TV and what we ate for tea that night. One of those weird things that just sticks in your head. Sort of like when you rememb