My mum passed away in 2004, from a rare condition called MSA. I was 18 years old. I thought that would be the hardest thing I would ever have to go through in my lifetime.
But unfortunately it wasn’t.
At the end of 2014, my partner and I found out that we were expecting, we were so happy. My pregnancy was straight forward, a bit of morning sickness early on but nothing serious.
Watch: Nikki Gemmell on the unbearable reality of her mother’s death (post continues after video)
Our 13 week scan was great, as was our 20 week scan. We also had a number of blood tests that came back fine. We found out we were expecting a baby boy. Because I was relatively young, and everything seemed to be going well, our doctors didn’t see the need for any further scans or tests after 20 weeks.
I made sure I was super healthy during my pregnancy. I did everything by the book. No alcohol, no coffee etc. We gave birth, at 39 weeks, on July 14, 2015, a day before my birthday.
Cooper was the most beautiful thing we had ever seen. We were told he was fine.
Things took a turn for the worst later that day. Cooper was breathing heavily, and one of the nurses noticed, and took him to the nursery to be checked.
And so began the worst few days of our lives.
That night we were told there might be something wrong with Cooper’s heart, he would need to be transferred for further tests. He nearly didn’t survive the trip from the Gold Coast to Brisbane.
The following day, on my birthday, we were told that it wasn’t his heart. He had a rare condition, called Vein of Galen (genetic, but completely unrelated to what my mum passed away from). A rare condition, which affects approximately 1 in 3 million babies and is rarely detected during pregnancy unless you have a scan after 30 weeks. Some cases can be operated on but Cooper’s was too severe. He was immediately put on life support.