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Your son's heart isn't working.

Friday 29th September 17 is World Heart Day it is where we raise awareness for all things heart. Strangely it is also my original due date with Elijah. Something we know all to well. Elijah, my first son was born with an undiagnosed heart condition which led to open heart surgery at 6 months old. It was and is a very painful journey to go down with your child. This has been inspired by all of those heart/ CHD parents currently navigating their way through all things heart with their warriors.

For those who want or need support and vital information please do visit Tiny Tickers who strive to improve early detection and care for all babies diagnosed with heart conditions.

Me and my heart warrior


To you; the CHD parent,

After being dealt the devastating blow your child’s heart isn’t working properly, your world feels like it is crashing in around you.

They can’t be right, can they?

You refuse to believe it, go into denial, this cannot happen to you and your baby surely?

You look over to see your child wired up to every machine and it hits you, your child could die.

The heart is pretty much the most important organ in the body, and you need it to live.

What if they don’t make it?

How do you break this to everyone?

What did you do wrong?

Was it that missed vitamin during pregnancy? Did you do something wrong?

You feel responsible for this; the guilt is unbearable, it was you that grew them wrong.

Leaflets are handed to you explaining the inner workings of the heart, terms you don’t understand and the complications that come too.

It isn’t enough that your child’s heart isn’t working properly, that it is structurally not correct but they could face a whole host of life threatening issues on top.

You look over at your partner and his face is grey, his head in his hands.

The life you imagined for your child has been ripped away, will they make it to their first day at school? Will they graduate? Get married? Have children?

 Will they live?

What life will they have?

Will they keep up, or be forced to stay at home, miss out because they are struggling?

In a matter of minutes, their life flashes before you, and you fear for the worst.

Talks of surgery are more and more frequent, but they do not need this do they? They have got it wrong after all.

Appointments made, scans and tests are completed and you suddenly have consent papers in your hands.

You are potentially signing away your child’s life, or giving to them.

You do not dare to hope, what if you jinx it?

What if you do not bring them home again?

That you lose your baby?

You live the hospital life, you fear every cold and flu season, future surgeries and if people will make fun of him for the incision mark down his chest.

You try and act normal, pretend everything is fine but you live in constant worry that something will go wrong.

That they will discover something at the next consultant meeting.

You try your best to raise awareness, to speak to others going through this, you try to get through it.

You still feel a pang of jealously when your friends have healthy babies, and you put of having another baby in case it happens again.

Each milestone they pass, starting nursery, walking, riding a bike, you wonder if they will make the next one.

You try not to hope in case it is cruelly taken away but as time goes on you feel yourself relaxing slightly. Until the next appointment that is.

You teeter between overprotective parent, and being numb to them falling over and bumping their head, I mean come on you’ve had heart surgery!

Deep down you know that CHD is now possibly the biggest part of your life and will be forever now.

There will be dark days, days you do not think you can come back from like seeing your child with a chest drain stitched into his chest.

There will be amazing days, like seeing him meet his brother for the first time.

It is not a smooth journey, especially when there is no visible end.

It is ongoing, stretching out for lifetime.

As much as you are a parent for the rest of your days you are also something else.

Part of a club that you really didn’t envisage on becoming part of, one where membership was mandatory.

Although it feels like it, you are not alone.

Never feel guilty for being sad, angry or even resentful it is all normal.

To you the heart parent, I say to you it is okay to hope again no matter how dark your day is.

From a CHD TOF Mum x






  1. As someone who both has a CHD (single ventricle) & a child with CHD (Shone's) I can definitely say being a parent is harder. Much love xx


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