Eden’s heart journey

Eden’s heart journey This is a page to keep family and friends up to date with Eden and her heart journey

❤️ We got THE PHONE CALL this week — Eden’s next open-heart surgery is booked for 19th November. 💔It’s one of those mome...
07/11/2025

❤️ We got THE PHONE CALL this week — Eden’s next open-heart surgery is booked for 19th November. 💔

It’s one of those moments where life just pauses. Plans go out the window, life gets a little more chaotic, but all that matters is making sure my brave girl is ready for the road ahead.

It’s hands down the hardest thing to go through as a family, but I will continue to smile through the fear and pray through the exhaustion.💖

The girls 11th birthday and Christmas is just around the corner, and while it’s not exactly the lead-up we’d imagined, we will continue to find joy where we can and hold onto hope every step of the way. One day, one heartbeat, one hug at a time.

Thanks to everyone keeping Eden in your thoughts — it truly means everything.

My brave girl has done it before, and she’ll do it again.

Alongside Edens other heart defects, she has something called an AVSD, Atrioventricular Septal Defect which means the wa...
28/09/2025

Alongside Edens other heart defects, she has something called an AVSD, Atrioventricular Septal Defect which means the walls and doors in her heart didn’t form the way they should have.

Instead of her having two separate valves (one for each side of the heart), she has just one big valve that doesn’t close tightly. Because of this blood flows the wrong way, making her heart work harder and sometimes sending too much blood to the lungs.

I sat down with Edens surgeon a few weeks ago and I have only just about got my head around the next steps for Eden. It turns out she is too young for a valve replacement as she has to wait until it grows to an adult size. The pressure and velocity of blood inside her heart it’s causing significant damage to the valve and her surgeon has suggested we intervene soon to desperately try and save the valve and prolong its life and prevent further damage until she can have the replacement. It may be that we continue this process over a few more years.

Heart surgery #5 incoming until then we just sit and wait for the phone call…. ❤️❤️❤️❤️❤️

19/08/2025

💔 Update on Eden - it’s been a while since I’ve posted.

It’s been 2 and a half years since Eden’s last surgery, and sadly it hasn’t worked the way we had all hoped. We found out last week that she’s now being placed back on the waiting list for another open heart procedure. This will be Eden’s 5th operation on her heart. 💔

As her mum, it’s heartbreaking and traumatic to watch my little girl endure this again and again, knowing I can’t take the pain away or change the outcome. The waiting, the worry, and the helplessness are overwhelming at times — but I continue to stay strong for her and for Darcey.

This journey affects every part of our lives: school, family time, friendships, work and even the everyday moments that should be simple and carefree. Yet through it all, Eden continues to show such courage and strength.

For us as a family, it’s going to be heartbreaking to see her go through this again, the trauma , and the long waiting list makes everything even more uncertain. We’re doing our best to stay strong, to give Eden as much joy as possible, and to keep her spirits high.

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