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.
To you; the CHD parent,
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
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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
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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