Posted Wednesday 10 October 2012

Sophie's story so far...

Before Sophie’s wish to meet SpongeBob SquarePants was granted, her mum Amanda shared Sophie’s journey so far and what the promise of having her wish granted meant to Sophie in the lead up to her wish coming true.

“Sophie and twin brother, Toby, were born prematurely at a fragile 28 weeks, weighing little more than two pounds apiece. Their first three months were spent in the Neonatal Unit at the Royal Hobart Hospital. Their older brother Ryan who was two at the time was thrilled to be a big brother.

Doctors started to question Sophie’s health early on. Her weight gain and liver function were poor and she had jaundice. It wasn’t until she was four months old, and had been home one month that they diagnosed her with biliary atresia - a liver condition which affects approximately one in 20,000 children per year, usually girls.

A few days after her diagnosis Sophie had a procedure called a Kasai. The Kasai procedure is a surgical treatment performed on infants to allow for bile drainage. Kasai is not a fix, however it buys more time, allowing the child to become stronger before a transplant is required.

Sophie’s Kasai worked for about 12 months; then one day she literally just turned yellow. Sophie was almost two when doctors decided she would need a nasogastric feeding tube. Her bones became very brittle, and we were in and out of hospital more times than not. Sophie’s disease was making her terribly sick. Doctors watched her liver numbers closely, and after three broken bones within as many months, decided it was time for her to be ‘worked up’ to go on the liver transplant waiting list. She was officially listed in October 2010, at age two years and four months.

Sophie’s nine month wait was scary, emotionally draining and heartbreaking. We were basically watching her die. I would whisper to her each night when she went to bed: “It won’t be long now princess, and you will have a shiny new liver.” I started to feel guilty as in the end she would just nod like she didn’t think it was going to happen. Just days before we received ‘the call’ I actually started to prepare myself for the worst. But on 17 July at 11:15pm Nurse Kathe, called with the news. We had to be at Hobart Airport by midnight so that the Royal Flying Doctor Service could fly us to Melbourne. We were then collected at Essendon Airport by a policeman who drove us, lights and sirens blaring, to the Royal Children’s Hospital. Sophie thought it was fantastic and was telling everyone they were under arrest! She was braver and more prepared than me that night. She showed an acceptance beyond her years, and a calmness that supported me during this scary, unsure time. The next few months were a blur, however the transplant was a success and after taking time out to heal it was time for Sophie to look forward to her wish granting.

The opportunity for Sophie to make a wish has been the one true constant in our family. It’s been like a never ending gift, which has given so much joy even BEFORE we have experienced it! Sophie still requires numerous blood tests each fortnight and other medical procedures and we frequently use the wish as something to talk about and to inspire her during these difficult times. The wish will be an amazing way to celebrate Sophie’s one year transplant anniversary. We waited 12 months for the wish holiday as Sophie could not go into heated pools for 12 months after her transplant, so the 12 months waiting has been so magical! More effective than any medicine, I believe!!

I cannot wait to laugh on the wish. There wasn’t a lot of opportunity for laughing whilst Sophie was getting sicker, and that was incredibly hard as we are a very close, loving and happy family. The boys have been through it all too and I am looking forward to sitting back and watching my kids laugh so much it hurts. They deserve it.”

Read part two of Sophie’s story.