It is not unusual for a woman to be nervous during her first pregnancy, but for Chantal Bryan the feeling was intense. “The midwife constantly reassured me that the baby was fine, but I couldn’t get rid of this worry. Even with four weeks to go I hadn’t bought a car seat or a pram because I had such a strong feeling that something bad would happen.”
She and her husband, Chris, a vicar, are devout Christians. Offering support to parishioners in distressing situations is a part of his job. He wondered if Chantal had perhaps been affected by hearing him talk about his parishioners, so when she felt anxious they prayed together. “That just made the feeling get worse,” she says.
One morning in January 2006, when she was 37 weeks and four days pregnant, she and Chris decided to drive to a pub for lunch. En route through the Oxfordshire countryside they rounded a bend. Chantal reckons they were travelling at about 40mph along a main road. Chris didn’t see the car turn directly into their path. The impact, says Chantal, was like hitting a wall. Incredibly no one was seriously hurt. Chris, Chantal and the driver got out of their vehicles. An ambulance was called. “I thought, ‘OK, so I knew something would go wrong and now it has. We’re all OK, so now hopefully things will improve.’ ”
Chantal and Chris went to Swindon Hospital for checks. Both were fine. The airbag saved Chris. Chantal had been wearing her seatbelt correctly, with the horizontal strap below the baby bump, so hopes for the baby were high. In A&E the foetal heartbeat was fine. Yet by the time the couple reached the maternity ward it was fluctuating wildly. The registrar saw a dark spot on a scan and began preparingChantal for theatre. The placenta had detached from the uterine wall (abrupted) and behind the point of separation there was a blood clot.
After an emergency caesarean the blue and inert form of their son, Jonathan, was taken to intensive care. Ten days later he was in Bristol Children’s Hospital. A consultant relayed the devastating news of an MRI scan. “He said it was the worst scan the technician had ever seen,” Chantal says.
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Jonathan was diagnosed with moderate to severe cerebral palsy resulting from the oxygen deprivation he suffered after the placental abruption. There was a strong possibility that he would never walk, talk, eat or perhaps even recognise his parents. He also had liver and kidney failure.
“It was like listening to a piece of music in a minor chord and waiting for a major chord that never comes. The consultant told me it was unfortunate that Jonathan wasn’t on a ventilator because then we could have chosen to switch it off.”
We are sitting in a bright modern room in the Bryans’ four-bedroom rectory in Wiltshire. It looks modern because it is actually a whole new section, funded by the insurance settlement and delivered by crane. This is Jonathan’s half of the house and contains all the paraphernalia that keeps him alive: a ceiling-mounted hoist, a special bed, a bath and a utility room where the 30 daily medicines that cover muscle stiffness, dribbling, vitamins or organ-rejection (he had a kidney transplant aged three) are kept. There are two carers in the day and one who stays with him all night.
Jonathan, 11, sits on Chantal’s lap. He is a small lad, breathes through an oxygen tube and is fed by another. He has limited muscular control, so he writhes, grunts and dribbles quite a lot. Chantal holds him up straight and mops his mouth. “Open your eyes, John John,” she says. And this is the moment when you know that, despite daunting physical limitations, Jonathan Bryan is in there, cognitively intact, completely alive.
“Hello. Thanks for coming,” he says, spelling out the words on an e-trans board, a Perspex alphabet display on which he can choose letters by using subtle eye movements. Interpreted by Chantal or his friend and teacher Sara, he is able to communicate quite speedily. If he is writing he can produce 400 words in three hours. The story of how his voice emerged, in his own words, “like a bird from a cage” is rather extraordinary.
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His first three years were extremely tough. He was in hospital for three months after he was born. Then he needed kidney dialysis three times a week before the transplant.
“When he was two months old the intensivist was worried that Jonathan wouldn’t survive being intubated as part of the process of going on a ventilator,” Chantal says. “The consultant asked us if we wanted to call it a day. I asked him, ‘Have you ever met Jonathan?’ and he hadn’t. When he saw those big eyelashes staring up at him he agreed that there was something special about him.”
Aged five, Jonathan went to special school where he was labelled as having Profound and Multiple Learning Disabilities (PMLD). The teachers sang him nursery rhymes and gave him baby toys to play with. It was OK at first, but, alive inside, he wasn’t being taught to communicate with the outside world. “They didn’t offer me the chance to learn,” Jonathan says.
“Once you get the PMLD label they teach to the label,” Chantal says. “There are no other expectations. There was just no ambition to find out if he had any ability, but I knew he was in there and that what he suffer.’’
Chantal had always read books to him; Michael Morpurgo and the Narnia chronicles, mostly. She decided to take Jonathan out of school for an hour each morning and teach him maths and phonics herself. “There were some people saying, ‘Oh what a great mum you are,’ but actually it’s outrageous I had to take him out of school to give him an education.”
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Progress was slow. A specialist suggested that this wasn’t because Jonathan didn’t have sufficient intellectual capacity. It was because he was bored. He was being taught from a selected menu of about 100 words when really he wanted the chance to use language properly, to spell out in his voice.
“One day when we were trying to write a story he used the word ‘myriad’. I’d never taught him that word. He’d obviously picked it up while I was reading to him and that was the holy grail for me, for Jonathan to express himself as an individual.”
“Before my spelling board I had to choose whole words to put next in my stories,” Jonathan says, “but once I could spell I wanted to use and experiment with the words that had been my portal into the imaginary world created by books. Until I started writing I had no idea I would derive so much pleasure from it.”
As his writing and “speaking” improved Chantal and Chris were at last able to ask their son about the long, silent years that had gone before. Jonathan says: “When I first began to spell, this is the question my parents wanted to know: what is my earliest memory? It’s when my sister, Susannah, was born. It was love at first sight (and has mostly been ever since!)”
Jonathan was also able to share more robust opinions; he told them he hates having his face washed. He is fed by tube, but enjoys a dab of chocolate or ice cream on the lips. When Chantal offered him new “eye-gaze” technology for communicating he didn’t like it and said: “Chuck it out the window.’’ He’s pretty well-informed on wider issues too. When I ask him what the worst thing about the state of the world is, he replies: “Child poverty. Why is child poverty on the increase in our country? It is an outrage. Why are more grown-ups not outraged by it?”
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After two years of home schooling Jonathan was matching his able-bodied peers at English at a local primary school. Last September he began secondary school, where he studies English, maths and science three days a week. On the other days he writes a blog and recently completed his autobiography, Eye Can Write. Perhaps most impressive of all he has organised a campaign to ensure that other children with the PMLD label are offered educational opportunities. “Children in these situations should not be written off,” he insists. “I was trapped. No one could hear me.”
Even in the middle of his new life, the challenges keep coming. He has had to confront the idea of death earlier than most children. For example, 18 months ago he was seriously ill with a respiratory infection. Close to death, he had an amazing dream about playing in Jesus’s garden. It made him not want to survive.
“I asked him how he knew it was Jesus’s garden,” Chantal relates. “And he said, ‘Because I could speak, Mummy, and so I asked someone. Also I was climbing trees and running around. I was free and I wanted to stay there.’ ”
Jonathan is listening to us talk. He wants to say something. “It was the toughest decision of my life to come back,” he says.
“Oh come on, John John,” she chides him affectionately, before saying: “Of course it’s hard to hear your own child say they want to call it a day, but when you see it from their point of view, there is a rationale to it.”
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There have been so many trials. There was the time when Chris and Chantal were given a 140mph police escort down the M4 to Bristol Children’s Hospital because Jonathan was expected to die. Or when Chantal walked the streets of Bristol close to despair because she knew the pain Jonathan was in.
“We don’t want to say goodbye, but realistically we know it’s going to happen sooner rather than later,” she says. “Jonathan has met with his GP and palliative-care consultant to discuss dying at home. It’s an extraordinary conversation for an 11-year-old child to have, but I do believe he is fulfilled. His gift has been to find his voice and make good use of it. I can’t think of anything more any parent could want for their child.”
My Life is on CBBC on February 5. You can read Jonathan’s blog at eyecantalk.net