Ami-Grace was born at 25weeks gestation. An extremely premature baby, she had a brain bleed at 24hours old and was given a 10% chance of survival. Ami-Grace miraculously survived but it wasn’t without it’s struggles. She spent six months in neonatal intensive care and suffered many complications, including bowel surgery and eye surgery.
Ami-Grace came home on oxygen and continuous tube feeds. She was a very poorly baby, I was warned she’d end up back in hospital, that things would be tough, that nobody knew what she’d be capable of.
As the years passed, Ami-Grace coined the nickname ‘Cub’ because she fought like a tiger, and despite the severity of her disabilities and the surgeries, procedures and torture she endured, she was such a happy child. Even during regular admissions to hospital for pneumonia, as soon as she felt well enough she’d be laughing!
She learned to smile, learned to sit and at aged 7 even learned to walk! She was a medical marvel, a testament to strength and determination. With a smile that could light up a room and the tenacity of a tiger, she took on the world and won.
A couple of years ago, things changed. Cub started losing skills. The epilepsy she'd had when she was little got much worse, she lost the ability to walk and was showing signs of pain and distress. Nobody could figure out what was wrong. As her medication went up and life got more and more scary, I grew frantic.
Eventually, one of her doctors suggested she have a brain MRI scan to see if there was a problem. I expected the scan would be clear, we all did I think. It was January this year the results came in. Cub had ‘active hydrocephalus’ (fluid on the brain) that had been there for a long time. We were all shocked, Cub must have been in incredible pain, it was a miracle she was alive.
In March of this year she underwent brain surgery to place a shunt, this drains the fluid from her brain into her abdomen, this reducing the pressure in her head. Shunts are not without their problems, Cub’s already sensitive organs are taking some getting used to it, complications can be life threatening so we live our lives day by day.
Some days her smiles are like they used to be and they are the most wonderful days.
Right now we’re concentrating on living happily, even if it isn’t ever after.