Orion’s parents took him to hospital when he became unwell aged two. He was sent home but continued to deteriorate. They returned the next day and Orion was admitted. He was diagnosed with pneumococcal meningitis, an illness caused by Streptococcus pneumoniae bacteria, and septicaemia, blood poisoning caused by large amounts of bacteria entering the bloodstream.
He spent five and a half weeks in hospital, during which time he was on a continuous course of antibiotics. CT scans showed bacteria on his brain, and it was several weeks until Orion was well enough to have a lumbar puncture to confirm the diagnosis. After four weeks he underwent a sedated auditory brainstem response (ABR) test, which confirmed the meningitis had left him profoundly deaf. He received cochlear implants a week later.
Tricia, Orion’s mum, remembers: “We were told that no one knew what the outcome would be, whether he would make it or what life would be like afterwards.”
Going home
Tricia tells us: “When Orion was finally able to return home, he was not able to crawl or roll over and needed help to hold himself up in a sitting position. He was two years old and had lost all of these skills.”
“Orion was left profoundly deaf from meningitis, so as a family we all began learning British Sign Language, which is an ongoing journey. Orion received cochlear implants, but this does not replicate ‘normal’ hearing; 22 electrodes do the job of thousands of tiny hairs in your cochlear. Orion’s brain had to learn how to interpret the electrical impulses as sound. He didn’t react at all when they were first switched on and it was months before he began reacting to any sound regularly.”
On getting support, Tricia continues: “The whole experience had been such a nightmare whirlwind that we didn’t know what we were looking for.”
Starting the rehabilitation journey
The hospital referred Orion and his family to The Children’s Trust Community Rehabilitation Service.
Tricia remembers: “We didn’t know what questions to ask as everything was still so new to us. Our world had been turned upside down.”
Nicola, Community Rehabilitation Nurse at The Children’s Trust, sent out some information straight away and called the family to see how they were coping. She then supported the family with some brain injury education. She also supported Orion’s return to nursery by working with his nursery and professional health network and carrying out a series of virtual education sessions with them as his parents.
“The Community Rehabilitation Service support was invaluable. They were the first people who really sat us down and told us what the future could hold and how best to support an acquired brain injury. We didn’t even fully grasp that Orion had a brain injury.
“The team helped us to know where to turn and what questions to ask. They provided training to Orion’s nursery so that when he was well enough to return, they understood how to support him.” Tricia, Orion’s mum
Living with a brain injury
Tricia shares with us: “Orion had to learn practically everything all over again. He learned how to roll, crawl, stand, walk, kneel, jump… everything. He needed to learn how to chew properly. He needed to learn to move his tongue around his mouth again... all the tiny things no one thinks about.
“He has interventions from so many different professions, including physiotherapy, occupational therapy and speech and language. However, I think the biggest impact was the training we received from The Children’s Trust on how to support Orion and the fact that he didn’t need to be ‘pushed’. We never tried to stop him, but we always let him take a break whenever he needed and we became his biggest advocate in all of his therapies. This training has also meant that Orion is now so skilled at recognising his own energy levels and he can articulate them so well, letting others know when his brain has just had enough.”
Continued support
In 2022, the team supported the family with their application for an Education, Health and Care plan (EHCP) for Orion, and then again with his transition to his school.
A year later, the family reached out to the team again as Orion was struggling to manage the fatigue that came with his brain injury. The impact of this fatigue meant that Orion was unable to attend school for a full day and was missing out on fun activities.
Lois, Community Rehabilitation Coordinator at The Children’s Trust, supported the family with further virtual sessions with Orion’s parents, school and network of occupational therapists and physiotherapists.
These sessions took place over several months, in which Lois delivered brain injury education to give them a greater understanding of Orion’s fatigue, along with strategies to help reduce the impact of fatigue on him. One such strategy was to keep a fatigue diary to see if there were any patterns to his fatigue and how it affected him.
Lois tells us: “I spoke to Orion’s parents in October to see how his return to school had gone. It was wonderful to hear how he had turned a corner with his fatigue. He is waking and excited to attend school, and his attendance has increased to five days a week. He is also managing some activities after school like swimming, as well as some outings at the weekend. He is self-managing his fatigue and those around him are able to support him with this, which is fantastic progress.”
Tricia adds: “It has been invaluable to know we have somewhere to turn with questions. We had to provide a lot of support to Orion’s nursery due to his new deafness, even though it was all so new to us. It felt like a large weight off to know managing the effects of his brain injury was covered by The Children’s Trust. They also provided updated training when he moved into school and again it meant it was an area we felt we didn’t need to micromanage.”
Support through transitions
The Community Rehabilitation Service supports children throughout different stages of life after an acquired brain injury.
Tricia shares with us what this means to their family: “There are so many unknowns with meningitis and acquired brain injuries long term, it feels like a relief to know that The Children’s Trust is always there; whether it’s because Orion is transitioning somewhere new or because something has changed and we need advice.”
Orion has come a long way and is now able to join in activities and family fun.
