Madeline Seibert, clinical negligence lawyer at Slater & Gordon, looks at how one survivor who sustained a serious injury from herpes simplex encephalitis was able to turn to fitness in rebuilding his life
Herpes Simplex Encephalitis (HSE) is a type of infectious encephalitis which happens when herpes simplex virus enters the brain.
The virus is very common and around 90 per cent of adults become infected at some point during their life. The virus attaches itself to sensory nerves in the throat and moves to nerve cells where it sits as a hidden life-long infection. From time to time the virus can reactivate to produce recognisable symptoms such as cold sores around the mouth.
While the herpes simplex virus is widespread, HSE is rare. It is not known exactly how the virus accesses the brain, but it can cause severe inflammation and brain swelling.
The Encephalitis Society website highlights that HSE usually develops over a period of days and typically begins with very generalised ‘flu-like’ symptoms such as headache, fever, nausea and drowsiness, followed by neurological deterioration. If left untreated, the symptoms can progress, become increasingly worse, and can ultimately lead to death.
Ollie* (now 23 years of age), was just 13 years of age when his life was devastated by HSE. His disease started with general symptoms of headache, vomiting and temperature which Ollie’s parents treated with child paracetamol. His mother, Carly*, recalls that Ollie’s school contacted her and said that Ollie was not feeling well and had a headache, she said: “We just thought that this was a 48-hour tummy bug”.
However, Ollie deteriorated over the weekend culminating in Carly witnessing him having a fit. She says: “His whole body seemed to bounce off the bed. It was horrific and I will never forget it to this day – seeing your child bouncing up and down uncontrollably, I immediately phoned for an ambulance.”
Ollie was rushed to a Children’s Hospital where he rapidly fell into a coma and was treated in the intensive care unit. He was diagnosed with HSE and his doctors gave his parents the devastating news that unless they carried out emergency brain surgery, Ollie would die. Ollie underwent surgery to remove part of his right temporal lobe and release the pressure in his brain.
Fortunately, Ollie’s surgery was a success and he made an exceptional recovery however he was left with only part of his brain leading to brain damage including cognitive deficit, memory loss and processing difficulties. This in turn causes Ollie to suffer severe anxiety. His parents describe that it is difficult for Ollie to process simple instructions and he needs a strict routine. Anything outside of routine can cause Lee to suffer distress and anxiety.
The Encephalitis Society advises that the most common complication in HSE post-treatment is memory impairment because the temporal lobe is commonly affected by the infection. Often patients present with cognitive deficits and impaired memory which can be very disabling, leading to the patient requiring a lot of additional care.
Ollie’s parents explain that Lee was allowed home from hospital after two months, but he was a different child to the one he was before his brain injury. When he was first discharged from hospital. Carly recalls that Ollie had no recollection of where he lived nor even where his bedroom was situated in his home, she says that it was “like having a new-born baby all over again.”
Ollie’s father, Steven*, describes how Lee had to learn to walk and talk all over again. He said: “There are still little parts of Lee that are the same but his main personality was lost. His whole life changed.”
In terms of recovery, The Encephalitis Society highlights that although rehabilitation cannot return the person to the way that they were before the injury or cure their cognitive deficits, it can provide coping skills that lead to greater independence in everyday life and help to restore confidence and improve overall quality of life. Further the right ‘person centred’ rehabilitation can help reintegration into the survivor’s community and social life.
Before his injury Ollie was bright and driven child who has a love and passion for boxing and football. He was a school boxing champion and as such had the benefit of a very close relationship with his boxing coach, Karl*. Karl first met Ollie when he was about eight years old and describes how even at an early age Ollie was showing signs of boxing champion quality.
“He was the leader of the pack and no one could beat him,” he said. “He was the fastest on all of our records and his quick reactions lead to him being undefeated in three fights. Ollie was destined to become a champion on many levels. He was a very determined young kid.”
Karl was devastated to learn of Ollie’s brain injury and helped him to regain his strength and fitness by regular training at the gym. He describes that initially after his brain injury, Ollie “was like a little skeleton, he was like a shell, he couldn’t talk, it was really hard to see.”
However, with regular training at the gym, piece by piece, Ollie regained his strength. Karl recalls: “I would help him to train – getting him to remember foot work patterns and generally using his motor skills. Initially he would be tired after ten minutes, but little by little we gradually increased his fitness levels.”
Incredibly, through hard work and training at the gym several times each week, Ollie went on to qualify as a coach although due to his brain surgery he is unable to participate in contact boxing and due to his processing difficulties, he requires supervision. Karl explains that Ollie is “very much in tune with his body” and although he has cognitive disabilities, the fitness training helps him to feel more confident, secure and less anxious.
Despite the huge obstacles in Ollie’s life caused by his brain injury, he has found happiness, positivity, fulfilment and ultimately a successful form of rehabilitation through his sports training. His parents say that he is an inspiration to all who meet him, particularly the younger children at his club whom he helps to coach.
However, sadly not all survivors will have the close community links that Ollie had the benefit of before his injury. The Encephalitis Society stresses that many people affected by encephalitis are discharged without adequate assessment or consideration of their rehabilitation needs.
I asked Ollie’s case manager, Helen Brooks of N-Able Case Management, what her experience is in respect of rehabilitation for survivors of HSE and where they can be sign posted for help. She says that The Encephalitis Society is a good starting point to identify signposting towards support services, along with Headway UK. Headway UK have local groups throughout the country who can provide support.
Rehabilitation services and support, as in all aspects of brain injury, are very variable within the UK and understanding of encephalitis is particularly limited. Ollie has been fortunate in having such dedicated people around him and exploring his identity in sport has been a critical part of his rehabilitation to date.
*names have been changed to protect identities
