I’ll never forget the moment you entered the world. You were so tiny and perfect. Your daddy Nicholas, 29, and I had been so worried in the lead up to your birth. At your 20-week scan, we were excited to hear your heartbeat. But doctors noticed some abnormalities. The ventricles in your brain were very dilated and you weren’t swallowing properly. Running more tests, they put me in an MRI machine.
I’ll never forget how you squirmed in my belly. That machine was too noisy for you and I could tell you were a determined little girl. Tests revealed your brain wasn’t developing as it should be. Some parts were too small, others were too large. Finally, doctors discovered your 6Q27 chromosome was missing. How could something so tiny make such a big difference? You were one of only 50 people in the world with that precise chromosome deletion.
How could something so tiny make such a big difference?
No-one really knew what it meant for you. As my belly bloomed, I desperately hoped you’d be able to live a normal life like your big brother Joshua, now 10. All we could do was stay strong. I had faith in you, beautiful girl.
They warned us you might look unusual when you were born, but we fell instantly in love. You didn’t look strange at all – you just looked like our perfect baby Ezabella. We only got to hold you for a few seconds before you were rushed off for surgery.
I saw the brightest spark in you and knew you were a fighter. At just a few hours old, you had an operation to help you swallow and breathe more easily and were placed on a ventilator. For the first five days you were sedated, like a lovely sleeping angel. We were over the moon when you opened your bright blue eyes and looked up at us.
It was 13 days before we could hold you properly. The moment you were placed in my arms was one of the happiest of my life. Your proud big brother couldn’t get enough of you. It was almost two months before we got to take you home. By three months old, you were smiling and your cheeky grin melted my heart.
As you grew, we had appointments with speech therapists, physios and specialists but you took it all in your stride. At six months old, you had an operation to put a shunt in your brain to help with your ventricles. I was terrified, but you pulled through as you always did. That signature grin barely ever left your face!
Apart from regular hospital visits, you had a normal life. You were obsessed with The Wiggles and always got excited to see them. When we took you to the zoo, you were mesmerised by the butterflies. You couldn’t take your eyes off their bright wings.
By 12 months, you were a cheeky little character. You learnt to roll and were soon rolling around the room. You smiled at anyone who came near, learnt the word ‘hi!’ and used it constantly. I’ll never forget the look on your face when people said it back.
I had my hands full when your little sister, Alexis, now five months, arrived. But I just loved watching you kiss and cuddle her.
When you suddenly fell ill in December last year, it came as a surprise. Taking you to hospital, we thought you’d get better, like you always did. This time was different though, my darling Bella. You continued to get worse. Your heart rate and oxygen levels dropped as we watched on helplessly. The doctors did all they could but eventually there was nothing that could help. After we spent one last Christmas together as a family, we had to let you go. Your little body was still with us, but your brain activity had slipped away. It happened so fast.
After we spent one last Christmas together as a family, we had to let you go.
Before we turned off your life support, we talked about organ donation. While we knew losing you would be the worst thing that had ever happened to us, we hoped our heartache might somehow help another family. So someone from Donate Life came and talked to us about the process. Even though you had other physical problems, doctors discovered that your little heart was perfect. I knew it could do so much good.
So on Boxing Day, we all took our time to say goodbye. After I kissed you one last time, tears streamed down my face as you were wheeled away. You were gone. But that day, you saved a life. Your perfect heart was given to a little boy who needed it. You were one of Australia’s youngest heart donors.
Thanks to you, he is alive and recovering well. You always had a wonderful heart and it brings me joy knowing that it is still beating strong.
At your memorial service, we released butterflies into the air. I smiled as I watched them fly free, just like you are now.
Darling Bella, I think about you every day and I share your story whenever I can. I’ll make sure the world never forgets about you and the special gift you left behind.
All my love, Mum.
Originally published in that's life! Issue 5, 2016.
✔ One organ and tissue donor can transform the lives of 10 or more people.
✔ Australia is a world leader for successful transplant outcomes.
✔ Around 1600 people are on organ transplant waiting lists at any time.
✔ The family of every potential donor is asked to confirm the donation decision of their loved one before donation can proceed.
✔The most important thing in helping a family’s decision is knowing what their loved one wanted.
To learn more head to Donate Life.