Amanda's Story

08 Aug 2022

In loving memory of Ava

My name is Amanda, and I am 35 years old. I am the mother of Ava Lillah, who was born sleeping in 2019, and Isabel, who was born in November 2020. 

When I turned 26, I was diagnosed with Chronic Myeloid Leukemia, and we were in the middle of building our dream 'family' home with the hope of starting our family. When I was diagnosed, we were told that I would likely never be able to have biological children.  This was the most devastating news to absorb.   

For 5 years, I received treatment for my leukemia, and after careful discussion with my doctors, I was given the all-clear to have a break from my treatment and try for a baby. 

We were incredibly lucky and fell pregnant quickly, and we were expecting our baby girl in May 2019. 

At 32 weeks pregnant, during a routine hospital appointment I mentioned to my midwife that I had noticed reduced movement that morning. My midwife did a couple of scans, and I did not expect to hear the devasting news that my beautiful Ava had passed away.  

Ava Lillah was born sleeping a few days later on 18 March at 7:20am. 

When she was born, we fell even more in love with her. She had beautiful dark chocolate brown hair, rosy red cheeks, a sweet cupid's bow lip, long lean arms and legs and the cutest button nose. She weighed a very sweet 1.5kg and was a long 46.5cm at only 32 weeks old.  

The autopsy revealed that Ava had died from a Fetomaternal hemorrhage. There was found to be no cause or explanation for why this happened. It most likely happened quickly, and there would have been nothing we could have done.  

The days, weeks and months that followed were a whirlwind of emotions, some expected and some very surprising. 

I could never have imagined the impact of losing our first child. Not just on us, but on all of our immediate family, our friends and our extended friends and family. People we had never met reached out to us, sent cards and gifts, donated and sent their heartfelt love. It's a life experience one should never have to live through, and yet far too many have. 

I did an 11km fundraising run only months after Ava was born and was able to raise just over $12,000 to fund two Cuddle Cots with Ava's name on them. We’ve been lucky to also have amazing friends who privately funded a third Cuddle Cot themselves, also with Ava's name on it, and they surprised us on the day.  

You never think you will need support from a charity like Red Nose until it happens to you or someone you love. Red Nose's work is absolutely essential to continue to educate Australians and help prevent future babies and children from dying.  

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