Thank you to Heidi's mom, Stacy, for sharing her journey with us.
Heidi was a cheeky and bubbly little warrior. She had such a tough journey throughout her life but never once let it break her spirit. She was born with a type of spina bifida, lipomyelomeningocele. Despite her diagnosis, she spent every minute smiling and trying her hardest to follow her sister around wherever she could.
Just before her first birthday, she had spinal surgery to detether her spinal cord and soon after she began learning to walk, she was so determined! Everything was going to be fine, or so I thought.
At 12 months old, she woke up one morning and something was off. Her head was tilted and she wasn't her bubbly self. We had an MRI done and they found a large mass on her brain. She was rushed to Sydney and had surgery the next day to remove the tumor. After 8 hours, the resection was successful and we began settling into life at the hospital, waiting for the results.
When they told us it was ATRT and the protocol she needed to endure to try and give her a tiny chance of survival, I was crushed. I knew things would never be the same for her again, but we fought on, with her leading the battle.
She did so well. She was melting the hearts of every doctor she met, and her fight and sass soon became a well known story around the wards.
Unfortunately, Heidi caught an infection during the last part of her first round of chemo. She ended up in the ICU where everything just went from bad to worse as she ended up in septic shock.
She fought and fought and the doctors tried everything they could, but it got to a point where every attempt to save her was met by another set of problems and I couldn't bear to watch her laying there, unconscious and full of tubes any longer.
I made the heartbreaking decision, on the 19th of June, that if she began to crash again, that they would remove everything and just let me hold her. She hadn't been held for days. She hadn't eaten for over a week and there was not even access to tube feed her due to every avenue already being used for other medications. Her body had been shutting down in every way possible and she was just battling on so hard, I knew she would never stop fighting, so I had to stop for her, to let her go peacefully, warm and held in a quiet room, rather than on a table with doctors frantically trying to stop her.
And that's what happened. I held my beautiful girl, warm and wrapped up with her favorite teddy and whispered in her ears as I waited for her heartbeat to stop.
Remembering Heidi Claire Smith: April 15, 2019 ~ June 19, 2020