hen Christian and Nicola Bearman’s eldest son, Oscar, was born, Nicola and her mother, Heather Beckwith, sensed that something wasn’t quite right. “My mother used to be a nurse, and she noticed that Oscar had puffy eyes. His breathing was also very noisy, and sometimes laboured.”
Doctors at St Thomas’, where Oscar was born, gave him a clean bill of health, but his symptoms persisted, and his mother and grandmother remained convinced that further investigation was needed. It took many months and several trips to hospital, but his family was finally given a devastating diagnosis: Oscar has Crouzon’s Syndrome, a rare genetic glitch which causes the plates of the skull to fuse too early. “Obviously, we were very unhappy with the news,” says Nicola. “We knew that something was wrong, but we weren’t expecting anything like this.”
Once the diagnosis had been made, Oscar was treated at Great Ormond Street Hospital, where, because of the various possible complications of his condition – which can affect breathing, feeding, eyesight and hearing – he had around twenty specialist doctors looking after his case.
At eighteen months, he was rushed into theatre for his first major operation. The pressure was beginning to build up in his head, and Oscar underwent an eight hour procedure, during which his skull was cut open and springs were inserted to make room for his brain to grow. Although Nicola wasn’t aware of it at the time, this was a relatively new operation and Oscar was the first of a handful of children to be given it.
The procedure was a success, and Oscar made a good recovery. As well as being delighted that Oscar has had such excellent medical care, Nicola is full of praise for the methods of the staff at Great Ormond Street. “They’re so amazing at dealing with children. All the different staff have ways of getting things done and making the children as comfortable as possible.” It should be a while before Oscar needs to have another major operation, but he continues to require a variety of more minor procedures and regular checks, and Great Ormond Street is going to be a part of his life for many years to come.
The care that Oscar receives is the same that any child with his condition would be given through the NHS. However, his parents are not ordinary parents. The Bearmans and Nicola’s family, the Beckwiths, are wealthy and well-connected, and, such was their gratitude for the work of the hospital, they felt that they wanted to give something back.
So, with the help of family and friends in the theatre world, Nicola and Heather founded Theatres for Theatres – a fundraising campaign with the aim of raising £4 million to pay for much-needed new operating theatres at the hospital. “The hospital needs rebuilding to reflect changes in medicine,” says Nicola. “Operations have become more complex, and require larger machines and more people, which means that surgeons are forced to work in cramped conditions.”
Three years on, and the campaign has raised £4.7 million. But Nicola has no intention of stopping there. “Everyone has been amazing – and every pound counts. We’re currently talking to the hospital about other things that they need.”
What many people may not realise is that hospitals like Great Ormond Street, although funded by the NHS, also rely heavily on donations from the public. “The hospital needed £321 million for refurbishment,” explains Nicola, “and only £75 million of this came from the NHS. Many procedures are pioneered at Great Ormond Street, and for many families it’s a place of last resort. As it is, the hospital is at the forefront of the medical world – but without donations from the public they’d just be an average hospital.”
Oscar now has two little brothers, and is a fit and healthy four year old who’s just started school. “He loves being a big brother,” says Nicola. “He does everything other kids do – he’s very athletic, and a bit of a clown.” And thanks, at least in part, to the fundraising work of his family, Oscar and other children like him will continue to receive life-changing, cutting-edge treatment at Great Ormond Street.
One child who has already benefitted from the money raised by the Theatres for Theatres campaign is one year old Rhys Bignell. Rhys was born with Sturge-Weber syndrome – a condition that can affect the skin, brain and eyes. In Rhys' case it meant that he suffered from regular seizures. After many tests and visits to hospital, the difficult decision was made that Rhys would undergo hemispherotomy surgery at Great Ormond Street Hospital – a rare surgical procedure where doctors disconnect half of the brain – to give him the best chance of having a life without seizures. Since the operation, in June 2011, in which the right side of his brain was disabled, Rhys has not had any fits and has acquired new skills.
However, because the right side of the brain controls the left side of the body, Rhys has limited use of his left arm, weakness in his left leg and a visual field deficit. With the help of physiotherapists and occupational therapists at his local hospital and at Great Ormond Street, Rhys is making good progress. He is a loving, cheeky little boy who loves music and enjoys the play groups that his mum takes him along to, and he interacts well with everyone especially his brother.
The Theatres for Theatres Appeal has raised vital funds towards two new state-of-the-art operating theatres at Great Ormond Street Hospital for children who require specialist neurosurgery.
✽ Visit: www.gosh.org/theatres-for-theatres