Frustrating wait for boy's new skull

Melany Adams' son Jakeb is not allowed to run, jump or do anything that might jolt his brain. Photo / Greg Bowker

For most 7-year-old boys summer means a long break from school, family holidays, swimming and playing outside.

But Jakeb Adams must wear a helmet fulltime to protect his head, which has only half a skull after complications from neurosurgery.

Jakeb, who also suffers from autism and developmental disorders, had surgery at the Starship hospital in June to stop the 300 epileptic seizures he had been having every day.

After the operation he contracted a Staphylococcus infection at the site of his wound which aggressive antibiotics did not fix.

The infected bone was surgically removed and his family were told he would need artificial bone to replace the extracted section of skull.

He was sent home with his protective helmet and told he could not run, jump or participate in activities which could injure him.

Jakeb's mother, Melany Adams, has struggled to entertain her exuberant child since June and wants to start the long process of fitting him with the artificial plate.

"We do our best but you can't stop a 7-year-old from running around - it's impossible.

"We've recently let him on the swing, but after four months we were getting desperate.

"He can't jump because he doesn't have the skull holding his brain in place and it could get damaged."

Mrs Adams said Jakeb's neurosurgeon had told her he was unlikely to receive his new skull before Christmas - a timeframe which had been heartbreaking when faced with a child who "just wants to play".

She said Jakeb's autism made the situation even more difficult for her family.

"All he really had was his gross motor skills and now the ability to use those has been taken away as well.

"We've had to remove the tramp from the deck, where he can play, to the backyard. If he sees it he cries."

Mrs Adams was told that fitting Jakeb with the new skull required scans and various tests before surgeons could have the artificial bone made overseas - a process that takes a further three months.

She said Jakeb had not had an appointment at Starship for his initial scans and she was concerned about the delay.

"I just want to get the ball rolling. We haven't heard anything from the hospital but we know when it's our turn we'll have to drop everything ... We have four other children. It's impossible to work around."

The general manager of clinical services for women's and children's health at the Auckland District Health Board, Kay Hyman, said the timeframe for Jakeb's procedure was no longer than for anyone else.

"Correspondence on October 8 from Jakeb's neurologist to his mother explained that surgery to insert the replacement bone could not take place until a minimum of three months after his course of antibiotics ended."

This would make it unlikely the operation would take place before Christmas and Jakeb's mother had been told to follow up with the neurosurgical team if she was concerned by this. The Starship had no record of any such follow-up having taken place, she said.

The neurosurgical team had lodged a CT scan request to assist in planning the next round of Jakeb's treatment and were awaiting confirmation of a date, Mrs Hyman said.

Mrs Hyman said that the Starship was committed to providing Jakeb with the highest possible care, and it could understand the situation had been trying.

"Jakeb has been through a difficult time and his mother's desire to do the best for him is understandable."

Matthew Rogers, a district health board spokesman, said the delay for a CT scan had been exacerbated by radiographers' industrial action.