After 12-year-old Noah told his mum Georgina that he was worried about the shape of his back, a hospital check-up showed his spine had twisted due to scoliosis.
An MRI scan later revealed Noah’s scoliosis had been caused by Chiari malformation, a condition where the cerebellum at the base of the brain migrates downward through foramen magnum. Noah was referred to Great Ormond Street Hospital (GOSH) by his consultant.
Georgina explains the condition: “The cerebellum herniating onto the spinal cord caused him pins and needles in his hands and banging headaches at the back of the head. He always had trouble as a little boy chewing and swallowing as well. We would never have linked these things but that is one of the symptoms of Chiari malformation.”
Helping with anxiety
When Noah came to GOSH, Neurosurgeon Mr Zubair Tahir talked Noah and his family through the x-rays and explained that Noah would need surgery known as Foramen Magnum decompression.
After having had an emergency operation in the past, when he was six years old, Noah was very concerned about going through another procedure.
GOSH has pioneered a range of services to support children and young people who are worried about their treatment.
Patients like Noah are offered therapeutic play sessions with specialist staff, tours of clinical areas on Saturday mornings, meetings with the teams involved in their care and demonstrations of medical procedures using toys to prepare them for their hospital stay.
Senior Operating Department Assistant, Mike Stylianou, and Play Specialist, Sallyanne, worked closely with Noah to help him overcome his anxiety in the weeks leading up to the operation.
Georgina remembers the support Noah received at GOSH: “At the initial meeting with Noah, the team got him to write down what he was afraid of and what he wanted from the surgery.
“They showed him everywhere he would be: the theatre, the anaesthetic room, the ward, the High Dependency Unit. Mike and Sallyanne also took him to meet everyone before his surgery to make him realise that these people are looking after you. He could ask all the questions he had about what was going to happen.
“These are really big things if you are scared. It’s giving control back to him. Noah really felt like he had control.”
Feedback from children and their families has shown GOSH’s innovative approach to recognising and addressing patient anxiety has been hugely effective.
Surgery and the future
The support teams at GOSH helped ensure Noah and his family had a much more positive experience, as Georgina says: “This support was so important to Noah. For me to know Noah felt better about it, was a huge relief.
“He was really, really good when we were on the ward before surgery. After the surgery, Noah said he didn’t know what all the fuss was about or why he was so worried.”
“When Noah turns around to you and asks when he can go to GOSH to see Sallyanne and Mike again, you feel amazing.”
After successful surgery on Noah’s Chiari malformation, the surgical team at GOSH are now assessing whether he is ready for spinal surgery to treat his scoliosis.
Noah’s time at GOSH and his return home was particularly special because it featured in an episode of Paul O’Grady’s Little Heroes. Georgina says Noah really enjoyed being part of the show: “The whole experience was wonderful. Noah loved it. When they came to the beach after Noah had left hospital, he was in his element. He loved them being there.”