‘It’s a long time to look at your child deteriorating’

Alanna Conroy’s mother, Janet, did one last check to make sure everything was packed for hospital. Somebody was coming to look after the dog and they were going to collect Alanna’s grandfather for the drive to Dublin. Her 20-month wait for life-changing surgery was nearly over. Then the phone call came.

“[The woman] said she was sorry to tell me that Alanna’s operation would have to be cancelled,” says Conroy, referring to planned surgery on her daughter (13) who has Down syndrome and severe scoliosis, or curvature of the spine.

“I challenged it and said I wanted a concrete reason and she said that within the last 24 hours they had a lot of admissions.”

Alanna’s situation is not new: in winter, emergency department demand in hospitals peaks and so non-emergency cases can be put on hold due to a shortage of beds. But the impact on those awaiting major surgeries can be severe.

“Building her up to be confident enough to be not scared to go for the operation – so many people were involved in that,” says Conroy. “And [on Thursday] it was all taken away from her in a phone call and she just cried because she couldn’t understand.”

The curvature in Alanna’s spine forms an S-shape and the planned procedure, which would take up to six hours in surgery and which was postponed, involves placing two titanium bars in her back and tightening screws to the bone to straighten it as much as possible.

Her condition was diagnosed in April 2014 and an initial surgery scheduled for Cappagh orthopaedic hospital in Dublin last September was cancelled when the anaesthetist decided the procedure required the specialised facilities at Temple Street. She was placed on a priority list with her medical team determined to carry out the procedure before Christmas.

It was a long road and its end promised to bring a substantial change to her quality of life.

“It’s had a huge impact on her because of the physical aspect. In May [the curves] were 90 degrees and they are much worse now,” said Conroy from her home near Enniscorthy, Co Wexford.

“Alanna can’t walk very far; she can’t walk up and down stairs; her breathing is affected and she can’t do anything socially. She doesn’t sleep well; she has constant pain in her back, her ribs and her hips. One leg is greatly shorter than the other.”

Her mother praises the medical team at Temple Street who have said they would operate on Christmas Day if needs be. As is often the case, the frustration is down to simple resources in the health system.

Greater demand

Temple Street says there is greater demand in winter for beds due to children with respiratory illness. There are no such things as “protected beds” for elective patients meaning they may ultimately be given to a child awaiting transfer from the emergency department. That is a necessary priority but procedures such as Alanna’s can be “very important and complex”, a medical source explained, and are often difficult to reschedule.

Then there is medical preparation. “They had to get specialised monitoring equipment from the North. They had to order it and a man to come down to use it. That cost €10,000,” said Conroy.

“If there had been a bed in ICU then Alanna would be undergoing surgery [on Friday] and the whole team were waiting for her. She was on schedule and they had the monitor and now it’s all gone.”

It has been a long 20 months and now the wait continues. “It’s a long time to look at your child deteriorating.”