Bethan Robertson-Smith has mercifully few memories of the car crash that almost killed her. But one thing she can never forget is the moment she realised, after waking from a two-week coma, that she could not move any part of her face. ‘I was in my hospital room, peering into a tiny mirror trying to smile, and this blank face looked back. I couldn’t do anything.’ Bethan examined her frozen face for just a few seconds before returning to her bed. Yet, strangely, she didn’t panic or cry – having suffered horrific head injuries, her motionless features were the least of her worries.
Mona Lisa smile: Following her operation, Bethan is trying to raise awareness about facial palsy
‘I was having to learn to talk, walk and eat again so this was just another thing on top of it all,’ she says. ‘The whole time in hospital was like being stuck in a bad dream. Each day I just thought, “Tomorrow I’ll wake up.” ’ She was suffering from bilateral facial paralysis, meaning in that single moment of impact, every one of the 40 muscles in Bethan’s face had been paralysed. Her mouth was permanently open and dry, one eyelid was constantly closed while the other was stuck open.
A staggering 100,000 Britons suffer from facial paralysis, usually affecting just one side. It condemns them to a world without the myriad expressions we communicate through our face. For Bethan, the accident, which occurred in 2008 when she was 22, left her with a skull fractured in four places, a bleed on the brain and traumatic injuries to the base of her skull that meant she had to be induced into a coma for 13 days. Although she recovered, the paralysis was to become the most enduring legacy of the crash. It is only now that Bethan can show her happiness once again thanks to an extraordinary ten-hour ‘smile transplant’ operation.
Before and after: Bethan in 2007 before her crash, left, and four years later suffering from facial palsy, right
Until the accident, Bethan, from Trefeglwys, mid-Wales, had everything to look forward to. She was pretty, popular and bright. She had left school at just 17, gone travelling in Australia and returned to fulfil her dream of training to become a veterinary nurse. During the second term of her university course, she decided to drive home for a weekend but skidded across a wet road, straight into the path of oncoming car. When she woke from the coma, everyone was just relieved Bethan was alive. Then they were relieved that despite her brain injury, she was able to move and to communicate, albeit with extreme difficulty.
No one was overly concerned by her motionless face which doctors hoped would naturally heal itself. After two months in hospital, Bethan was sent to a brain rehabilitation unit. Within three months of the crash she was discharged from NHS care and sent home to her mother Beryl’s house. But by the fourth month of her recovery, the paralysis had begun to upset her. ‘I realised my face wasn’t getting better. I had no advice, no support, nothing. I didn’t know what was going on. I was very depressed, very anxious and by this stage both eyes were stuck open and had to have drops put in all the time.’
Procedure: How the operation was carried out
It may seem extraordinary that a patient could be left with their eyes permanently open, but when her facial nerve was crushed; it meant the muscles that shut her eyes stopped working. Facial palsy patients are usually able to open their eyes because this is a reflex controlled by a different part of the brain. But closing them requires muscles that are controlled by the facial nerve, which in Bethan’s case had been badly damaged. This meant her open eyes became dry and extremely sore, and often became infected.
Bethan tried to tape them down to sleep, then tried to cover them with an eye mask, but nothing worked. Eventually she learned to roll her eyes up into her head so that she could sleep. Although her mother was extremely worried and Bethan was seen by an opththalmologist, at the time nothing was done. Unfortunately, she now has blurred vision in her left eye, which may be as a result of the multiple infections. Locked in a face that couldn’t transmit even the slightest emotion was crippling for a once outgoing young woman. ‘It was horrendous being at home all the time, unable to go out because people would just stare at me in the street,’ she says. After eight months, she went to see a neurologist who said nothing could be done for her facial palsy.
Sadly, Bethan is not alone in enduring such a desperate and lonely time following paralysis of the face. It takes almost six years for the average patient with facial palsy to be diagnosed and offered appropriate treatment. Many have already been through horrific experiences that triggered their condition, such as accidents, cancer, stroke, and the most common cause – Bell’s palsy. Others are simply born with it. Even when a diagnosis is made and patients are offered one of the main types of treatments – physiotherapy, injections such as Botox to relax overactive muscles, or transplant surgery – many health authorities refuse to pay because the procedures are deemed cosmetic.
Last week, a charity called Facial Palsy UK was launched by surgeon Charles Nduka to help these vulnerable patients get the care they need. It aims to educate GPs about the condition so it can be diagnosed faster, and also to create specialist teams in every region who can see patients and assess which treatments would suit them best. Mr Nduka, a consultant plastic surgeon at the Queen Victoria Hospital in East Grinstead, West Sussex, says: ‘These patients deserve better. They have already been through terrible accidents or survived cancer. What they need now is not a fight with the NHS to get treatment.’
While Bethan refuses to condemn the doctors who repeatedly failed to tackle her facial palsy or the health trust that tried to refuse funding for her eventual surgery, she concedes there were critical delays. It was not until two years after her accident, and while visiting Australia that she learned of a treatment that may have offered real hope.
In Sydney, a friend took her to see an expert who told her there was an operation that might restore some function to her face. But on her return to Britain, Bethan was given the devastating news that she had missed the window to have this surgery. The facial nerve, which runs up through the base of the skull and controls every muscle in the face, splits into two, controlling the left and right side of the face. In most people, only one side is damaged and only half of the face paralysed. To have both sides affected, as in Bethan’s case, is incredibly rare. The only movement she had regained was an ability to lift the left side of her mouth by a centimetre.
In some cases, patients can have the pressure on the nerve relieved using steroids to reduce inflammation or possibly with surgery. However, this operation has to be done quickly before the nerve is completely lost. This is usually within a year of facial paralysis. The surgeon had to tell Bethan she had arrived a year too late. ‘I just couldn’t believe it. Not one doctor told me, not one person seemed to know,’ she says.
Finally smiling: Bethan after her operation, now able to smile and properly close her eyes
Luckily, Bethan was introduced to Mr Nduka, who offers specialist ‘smile transplants’. He carried out a lengthy operation called a Labbe procedure, during which the muscle that runs from the temple down to the jaw – the temporalis – is detached at the bottom. This is then rerouted and connected to the sides of the mouth. The temporalis is not the only muscle involved in jaw movement, so chewing and talking are not significantly affected.
Physiotherapy has helped Bethan learn to gently raise the corners of her mouth using the redirected muscles, giving her what Mr Nduka describes as a ‘Mona Lisa’ smile. It might not be the beaming grin she once had, but with just two muscles she is learning to create a smile that most of us create with 14. Bethan has also had surgery to insert a small platinum ‘chain’ a few millimeters long into her eyelids to help them close. Alternatively, patients can have a tiny gold weight inserted into the eyelid.
Bethan says it’s just the start. Although her brain injury means she cannot work because she still suffers from migraines and exhaustion, she is planning a move to Bristol to start a new chapter in her life. ‘The other day I saw a woman at the supermarket and she smiled and I managed to smile back,’ she says. Still, she is far from cured. She cannot pronounce the letter ‘B’ without pressing her hand to her mouth to create the right sound, a cruel twist for a girl called Bethan. She still struggles to move her lips and one of her biggest worries is that when she falls in love, will she ever be able to kiss the man of her dreams?
There are more operations ahead too, as her face will age differently to most and may start to sag. But although life is far from perfect, Bethan has agreed to be a spokeswoman for Facial Palsy UK. ‘I want people to know about this condition and I want patients to get the support that wasn’t there when I needed help. Being part of this charity means I now have a positive reason for working harder and helping other people with facial palsy.’
Source:Daily Mail UK