However lately, she’s become more withdrawn, a change her mother Susan attributes to deteriorating health.
“Her spine is pushing on her lungs and it’s making her breathing laboured. She’s had repeated chest infections and a couple of bouts of pneumonia. We nearly lost her once,” says Susan.
Unfortunately, for Siobhán she is one of a number of children awaiting surgery to address curvature of the spine, a condition known as neuromuscular scoliosis. She has the added complication of spina bifida and hydrocephalus.
Susan says Siobhán was assessed for surgery at Our Lady’s Children’s Hospital Crumlin in October 2012, but remains on a waiting list.
“We even met the anaesthetist at the pre-op assessment,” Susan says.
“But then it was decided she needed to have her tonsils out. They were larger than normal and the doctors were concerned it could hamper her breathing after surgery,” she says.
Susan says “a lot of messing” went on around whether to perform the tonsillectomy in Dublin or Cork. When they finally got an appointment in Cork, surgery was cancelled on the day because the anaesthetist was unaware of Siobhán’s additional health problems and was not happy to operate without a full paediatric team. The upshot was her tonsils weren’t removed until August 2014. Susan then contacted Crumlin to say her daughter was ready for spinal surgery. However, it was only then that Siobhán was put on a waiting list, despite her previous assessment at Crumlin, Susan says.
She was hopeful Siobhán would be operated on last summer after she met paediatric orthopaedic surgeon Pat Kiely. Mr Kiely and colleagues conduct pro bono surgery in an effort to reduce waiting lists. However, it didn’t come to pass. Susan is now concerned that it’s too late for any meaningful surgical intervention to improve the quality of her daughter’s life.
“I think myself the curve has gone too far. We’ve heard nothing since last April and our next outpatient appointment in Crumlin is in July. Whatever they can do for her now will only be a fraction of what they could have done had they operated sooner,” says Susan.
Mr Kiely said there were challenges in trying to see patients quickly enough and in conducting timely surgery. While they now have additional space at Crumlin with the opening up of a new theatre towards the end of last year, they still face the problem of having enough staff to run two theatres.
At the moment, the new theatre is being used one to two days a week, but Mr Kiely said, starting in April they should have one additional day per week, and up to three additional days per week come July.
“The space is there. To use it to the maximum, we just need the people,” he said.