Amanda, 34, shares her true life story
I stared at the clock and wished for time to stand still. Alone in the small hospital room with my newborn bub, Tori, I didn’t dare close my eyes.
She wasn’t even a day old and every second with her counted. Whenever I thought about nodding off, the doctor’s words rang through my ears over and over.
“She’s only going to last a few more hours.”
Falling pregnant at 17 had been a shock, but not as much as learning during my ultrasound that, like me and her dad, Tori had the same type of dwarfism .
“You both have a gene which leads to something called achondroplasia,” the doctor said. “I’m afraid it’s a fatal condition.”
I wouldn’t let myself believe it. Despite my young age and no longer being with Tori’s dad, I stubbornly refused an abortion.
I was strong! My daughter would be too. But when I gave birth to Tori, the reality hit me.
She was put on a breathing machine straight away, her lungs weren’t properly developed. Hours later, Tori surprised us all when doctors took her off the machine and she stayed alive.
Maybe she’s going to make it, I thought.
Pregnant with Kash.
With little time to spare, my family arranged for a priest to baptise her. By nightfall, it was just me and my daughter together.
As I watched her sleep, I couldn’t help thinking she looked like any other baby girl. But as the sun rose the next morning, Tori grew colder and colder.
Doctors tried giving her more oxygen but nothing could revive her.
“I’m so sorry Amanda,” a nurse said. Holding Tori in my arms, I willed her to keep going, but my hope wasn’t enough.
She took her last breathe and was gone. Back home, I struggled along in a daze. Nothing mattered anymore.
“You can’t go on like this,” my best mate, Ammie said. “This isn’t the Amanda I know.”
Ammie encouraged me to join her and audition for a role in a Pokemon stage show that would tour Dubai. I was hesitant at first, but others thought it was a great idea.
Kobey getting some air on his scooter.
When the two of us both got parts, we packed our bags and left Australia. I carried Tori’s memory with me, but being up on stage each night and partying away the days in an unfamiliar land helped me deal with her loss.
After the show ended, I came back home and started playing basketball. At one competition, I met Damian, who also had dwarfism.
He lived interstate but when we fell in love he moved to Sydney to be with me. After three years together, we decided to have a baby.
“Amanda, are you ready to go through this again?” Mum asked. Everyone was worried about what would happen if our next baby had the double dose of achondroplasia.
“I can handle it,” I said strongly, but I was shattered when doctors told me the news.
My little baby girl we called Aleeya had the same condition as Tori.
“Why is this happening to me?” I cried. “All I want is to be a mum!”
Damian and I followed the doctor’s advice and had a medical termination. I was worried Tori had been through so much pain in her brief 24 hours and I didn’t want Aleeya to experience that.
One year later, I fell pregnant again. This time we kept it a secret.
I sat in the doctor’s room, bracing myself for bad news.
“You’re having a little boy,” the doctor began. “He has dwarfism, but not the double achondroplasia.”
Relief rolled over me. I couldn’t wait to tell everyone. The pregnancy with baby Kobey went smoothly. My little boy looked just like me!
Some days I had to pinch myself to remember I was finally a mum.
My baby Lashantaye cheering.
I fell pregnant again just after Kobey’s first birthday. Thinking the worst was behind me, I went to the doctor, only to be told the same terrible news: Jamelia, the little girl I was carrying, had double achondroplasia.
Once again, I arranged for a medical termination. As I sat in the clinic waiting to have the procedure, I felt an uncontrollable urge to go to the loo.
I miscarried with Jamelia in the toilet just minutes before the termination was scheduled. Going home was harder than I expected, but Kobey stopped me from falling into a deep depression.
I only had to look at his smile before I’d start smiling too.
“Maybe I’m just not meant to have a girl,” I told Damian. We decided not to give up and tried again one more time.
Baby Lashantaye was born with dwarfism but was healthy.
Just eight months later I became a mum again to Tyrell, who was average-sized and in fine health.
I now had three beautiful children, but tensions were growing between me and Damian. Losing Aleeya and Jamelia had caused an insurmountable rift between us.
We started arguing more and more until I couldn’t see us ever returning to the loving couple we’d once been.
“Damian, we’re finished,” I said.
I’m so lucky to have my family.
He moved out and had the kids on weekends – now everything was on my shoulders.
It was a surprise when I reconnected with Daniel, a childhood friend I hadn’t seen in years. Like me, he was a sport nut.
We fell in love and had two more kids, Kahleeya, who had dwarfism and Kash, average height. Daniel is average height, which meant there was no risk of double achondroplasia.
I’ve raised all five children to be confident and not see dwarfism as a setback – Lashantaye is a cheerleader while Kobey plays soccer and baseball.
Along with my day job, I’m also busy working as a personal trainer.
Of course I’ve never forgotten Tori, Aleeya and Jamelia. We take flowers to their plaques and visit them regularly.
I’m sure they’d be happy to know they’re still a part of my big, loving family.
