Heart Mum Laura shares how her daughter’s diagnosis and treatment for CHD affected her mental heath.

Laura wants to start the  conversation around mental health for CHD parents and make it okay to say you’re not okay.

One whole year. It’s been one year since my daughter Elektra’s open heart surgery. My emotions are so mixed. Getting to wake up and see her so strong and fighting is the best thing ever. Seeing how far she’s come in this past year, every milestone will forever be held with my gratitude to the LGI, PICU and Ward L51.

 

You saved my daughter’s life and hopefully gave her more years before her next open heart surgery and, for the time you have given me with her, I will forever be grateful.

But on her heart anniversary I also have to remember the trauma this brought me. The massive impact on my mental health that was way beyond anything I expected. The decline, the endless hospital trips last year with my mental health needing support in A&E as I fell into a dark hole after Elektra’s surgery.

 

Forcing your baby against your chest and holding a mask with sleeping gas over their face while they go lifeless in your arms brings out a part of your brain you didn’t know existed. Elektra’s lifeless body lying in my arms, I placed her on the bed. I needed help from everyone around me as my legs went from underneath me.

 

I cried so hard and had to be pulled out of that room. I didn’t want to leave her, knowing the surgeons were about to stop my baby’s heart killed a part of me inside. What if that was the last time I would see her alive?

Eight hours passed from that moment. Eight long, tedious, and dark hours. She lost a lot of blood in that time. She had her first blood transfusion – they couldn’t stabilise her heart rate, but she was out of surgery. She made it! But we still couldn’t see her until PICU were able to stabilise her.

 

Finally, the call came that we could go and see Elektra. She was entwined with wires and tubes and beeps and buzzers. Endless medication surrounded her to keep her alive and as a mum it tore me apart that I couldn’t hold and kiss my baby. I could just stroke her tiny hand and hope and wait – and that was my only comfort.

 

In the days that followed her lungs collapsed, her wound got infected…but she fought. She fought hard. Ten days later we were home with a long journey ahead of us.

“Seeing your child go through something so serious really has a negative impact on your mind that not many speak about.”

Elektra was so strong and has fought so hard to be where she is today. But day by day I gave her my strength and I slowly crumbled.

 

2019 is luckily behind us. I’m stronger this year thanks to my family; my amazing friends – especially Linds, Lynds, Kerrie and Soph; a better support network and my amazing husband. Not to mention the beautiful smiles on my children’s faces. However, I’m now reliant on medication every day to keep my mental health stable. Some days are amazing, some days are okay… but luckily now, no days are the dark suicidal mess that I used to be in.

 

Seeing your child go through something so serious as open heart surgery (and a kidney removed the year before), it really has a negative impact on your mind that not many speak about.

Elektra with her big brothers Jett and Dallas

Yes, I’m forever grateful that my daughter is doing okay, but the journey to get here was traumatic. I’m proud of how far we’ve both come. Hopefully, maybe, her next heart anniversary, I might be medication free? That would be nice. Until then, here’s to ONE whole year of my baby’s zipper scar! She’s amazing and I’m so so proud of her.

 

I love you Elektra, I will forever go to the depths of hell and the heights of rainbows to give you the life you deserve.

 

If this can offer help to any other heart children and/or their parents, it would mean so much. I know that mental health isn’t spoken about often due to stigma and embarrassment, but I definitely believe it’s something we need to be more accepting and open about. After all, our children’s heart journeys are as impacting on us parents as it is on our children and it’s important that people realise that and recognise the impact of CHD as a whole.

Did you know? The Leeds Congenital Heart Unit has a dedicated Cardiology Psychology & Counselling Service who are trained to support CHD patients and family members from pregnancy to adulthood. They offer a safe and confidential space in which difficult thoughts and feelings can be shared, processed and worked through.

The service can offer support to anyone who is currently under treatment of a Leeds Teaching Hospitals consultant and may benefit from input around their emotional wellbeing to support their cardiac health, regardless if they live in the Leeds area.

You can get in touch with the team directly on
0113 392 6796 | leeds-tr.ccpt@nhs.net