What it means to be a heart parent

Mum-of-two Louise has kindly allowed us to share her thoughts on what it’s like to be a heart parent and these lovely pictures of her little ‘heart warrior’ Jessica, now five.

It took just seven words to change my entire life.

Seven words which broke my heart, shattered my dreams and turned my world upside down.

Seven words from which I emerged a stronger and more compassionate person.

“There’s something wrong with the baby’s heart.”

In that moment, I felt fear colder and stronger than any I’d ever known before.

In that moment, I knew I would do anything I could to save my child’s life.

In that moment, although I could barely grasp it, I became a heart parent.

I learned to hold on to hope and faith when there was nothing else left to do.

I learned to live in the moment and find joy in the darkest of times.

I learned to put my trust in the skilled hands of those who were caring for my child.

There were many moments when all I wanted to do was run and hide, to pretend this wasn’t happening.

There were many moments when the fear of the future felt overwhelming.

There were many moments when it seemed the only thing that kept me going was hope and the love, support and prayers of those around me.

This is what it means to be a heart parent.

I have looked at the huge hands of a surgeon and marvelled that they can perform such intricate surgery on something the size of a walnut.

I have sung my child to sleep in the anaesthetic room of an operating theatre.

I have handed my child to a surgeon, knowing that they will stop my child’s heart and prayed that I will see my child alive again.

I have spent hours pacing the corridors of a hospital whilst my child undergoes life-saving surgery.

I have spent hours sitting in intensive care listening to the endless beep of machines.

I have spent hours holding my child in my arms, thrilling at the joy of being able to do so.

I have learned that miracles can and do happen.

There are many moments where my feelings as a parent seem to be amplified:

Anxiety whenever my child is unwell.

Guilt on those challenging parenting days that come to us all – those moments when bedtime feels like it can’t come soon enough and I feel guilty for not enjoying the moments that I know I am so blessed to experience.

Joy and pride in all the little milestones that suddenly become extra special because of the journey it has taken to achieve them.

The road has been rocky at times and there are many dark moments still ahead.

I do not know what the future holds and I do not dare to try and look ahead.

This is a road I would never willingly have chosen to walk and yet I know I would walk it all over again for the joy and blessing of having my child with me.

I have discovered a faith that has helped me to endure throughout the dark moments.

I have discovered a strength that I never knew I possessed.

I have discovered a love stronger than anything this journey can throw at us.

This is my life.

This is our journey as a family.

This is what it means to be a heart parent.

Louise’s daughter Jessica, four, has the rare condition Hypoplastic Left Heart Syndrome (HLHS). You can read more on Louise’s blog Little Hearts, Big Love: musings of a heart mummy.

You can find out about work we are funding, led by Dr Pablo Lamata at King’s College London, to help personalise surgery for babies with HLHS here; and you can read Jessica's story here.