Rainey’s story

During her 20 week ultrasound, pregnant Mum Amber was told her baby had spina bifida. When Rainey arrived, her treatment began at just one day old when she had surgery to reinsert her spinal cord and close the hole in her back. Ten days later Rainey underwent another surgery, this time on her brain, to insert a shunt. Now nine years old, Rainey is on the waiting list for her ninth surgery.

Mum, Amber told us how she was feeling when she found out her baby had spina bifida.

“I felt shock, devastation, grief for the loss of future plans, fear of an unknown future, sadness for perceived future quality of life. But Rainey is amazing. She’s positive and determined.”

The family still have to visit the Queensland Children’s Hospital every six months, sometimes it can be as often as every fortnight. The impact of this on family life is huge. Visiting the Hospital for multiple appointments with specialists in the one day can be quite stressful. Mum, Amber appreciated the help offered by the Children’s Hospital Foundation, “The volunteers in the green shirts help with directions, bedside play volunteers distract from pain and boredom of the hospital bed and are remembered long after our stays.

“Surprise events at the hospital are just amazing and brighten our whole outlook…I still remember a ballet from years ago.”

Rainey is doing well at school and Mum, Amber told us that Rainey had said “I’m glad I have spina bifida because I’m the most popular kid in school.”

What an amazing girl she is!

Story written and details correct June 2019