text: A little boy has undergone more than 50 operations to have his entire face painstakingly rebuilt. Billy Mitchell, now seven, was born with Apert syndrome, a rare condition which left him with malformations of the skull, face, hands and feet. He endured a series of major operations to correct the deformities – which included a procedure to crack open and reshape his skull and another to rebuild his features. He also had a titanium frame drilled into his head, which was left there for nine weeks. Billy Mitchell, seven, was born with Apert syndrome, a rare genetic condition which causes malformations . The surgeries carried risks including meningitis, brain damage, catastrophic bleeding leading to stroke and potentially death, but Billy pulled through and now his parents say he absolutely loves his new face. Billy’s mother, Denise Mitchell, 47, said she knew immediately something was wrong with her son when he was born. ‘When I saw him I had an overwhelming sense of love. But he looked so ill and his skin appeared plastic and his head was misshapen,’ she said. ‘I also noticed his fingers and toes were sewn together.’ It was then a doctor broke the news he suspected Billy had Apert syndrome, a genetic abnormality where the bone plates in the skull fuse too early in the womb so the skull is unable to grow normally. The condition is caused by a chromosomal defect. Children with Apert have bulging eyes that are usually wide-set and tilted down at the sides. They may also have problems with tooth alignment due to jaw development problems, suffer from a cleft palate, and may have webbed fingers and toes. After his birth, doctors feared Billy would not last the night. The next day Mr and Mrs Mitchell, who live in Hertfordshire, were forced to have a heartbreaking conversation with doctors about turning off his life support machine. Specialists feared Billy's nose was totally blocked with misformed and premature fused bone, blocking his airway. Billy, pictured with his twin sister Lois, has undergone more than 50 operations to have his face rebuilt . But miraculously, Billy held  on, and in the morning he was transferred to a specialist children’s hospital where he had thin, metal tubes called stents inserted into his nose to help him breathe. He remained in a critical condition, surrounded by tubes and machines. Finally, when he was a month old, Mr and Mrs Mitchell were able to take him home to join his twin sister Lois and older sister Darcy, then five. But he often stopped breathing in the night, and at 10 weeks old Mrs Mitchell heard him crying. Apert syndrome is a genetic craniofacial abnormality that occurs in around one in 160,000 to 200,000 births. The condition is characterised by malformations of the skull, mid-face, hands and feet. The skull is prematurely fused and unable to grow normally. The mid-face - the area from the middle of the eye socket to the upper jaw - appears sunken. Some children with the condition have fused fingers and toes. Early surgery can relieve the pressure that builds up inside the fused skull as the brain grows. And operations can be carried out to re-model a child's face. She noticed that his left eyelid had been pulled behind his eyeball, causing his eye to pop out. After rushing to a doctor, he ended up having his lid sewn shut for a week. Children with Apert syndrome have very small eye orbits, meaning more of their eyeball is exposed. Billy's eye orbits were so shallow, especially the left, that his eye regularly popped out of its socket. Doctors advised Billy have his eyelid sewn together after he developed a corneal ulcer. Just six weeks later, he needed a major operation to relieve pressure on his brain, save his sight and reshape his whole head. Known as a ‘front orbital advancement’, surgeons opened his skull, detached it, remodelled his forehead and pieced it together again like a jigsaw. They also inserted two pins – each three inches long – into his head. For six months, the pins were turned twice a day to create more room inside his head to relieve pressure on his brain. Billy now needs 24-hour care, which has put a strain on family life. Mrs Mitchell said: ‘Luckily Paul and I had a strong relationship and we talked to each other about how we felt. ‘But Darcy was still young and had to grow up fast. When Billy was four months old he underwent a major operation to relieve pressure on his brain, save his sight and reshape his whole head . His fingers were also fused together leaving him struggling to clasp things properly. When he was 17 months old surgeons operated on him to separate Billy's fingers and toes down to the first knuckle . ‘And as for Lois, every time Billy was admitted to hospital, she’d look around wondering where he was. ‘But she was thriving, passing all the usual milestones. ‘It was also clear she had a special bond with Billy. Sometimes they’d snuggle up together. ‘When she learnt to sit up we propped Billy up with cushions and they’d spend ages playing together. And when Lois became mobile she’d fetch Billy his favourite toys.’ Billy’s fingers were fused together – known as ‘mitten hands’ – and so he struggled to clasp things properly. But when he was 17 months old a surgeon at Leeds General Hospital agreed to operate on them. During a nine hour operation, involving bone and skin grafts, he separated Billy’s fingers down to the first knuckle and did the same with his toes. In a second operation he finished the process, separating them fully. Mrs Mitchell said: ‘Billy had all four limbs in a cast for seven weeks but the results afterwards were amazing. ‘He grew in confidence overnight and a couple of weeks later learnt to sit up by himself. ‘Bright as a button he’d would watch Lois intently and began to copy her. As a family we were astounded by his progress. So too were the doctors.’ But the outside world was less understanding, and Mrs Mitchell said people would whisper whenever she took billy out in his pram. ‘Walking down the street one day I heard one woman say to her friend: "God he looks awful". Earlier this year Billy had another major operation which left him with a frame fitted to his face for nine weeks . ‘I was so upset I went straight home. ‘Another time when the twins were two and a half we were stood in the queue to see Santa when Darcy noticed some children pointing at Billy. ‘She told them not to do it because it was rude. Afterwards I overheard their mother saying: "Well she shouldn’t bring him out should she." ‘If only they knew what Billy was going through.’ But determined not to wrap their child in cotton wool, Mr and Mrs Mitchell sent Billy to nursery and he went to exactly the same school as his twin sister Lois. Despite his difficulties he has turned into a typical little boy, obsessed with cars, reading books, and enjoying playing fancy dress with his sister. Since his most recent surgery, Billy loves his new face, his mother Denise said . ‘He loved life and was determined to join in with everything,’ Mrs Mitchell says. In the summer of 2012 he underwent more major surgery. During a nine-hour operation surgeons took the left hand side of his skull off to remodel it and put it back with titanium springs to allow for more growth. His condition also left him with a distorted face and his eyes were becoming more and more exposed due to shallow eye sockets and breathing was a struggle. So earlier this year he also underwent high risk mid-face surgery, where his face was literally taken apart, reshaped and put back together again to create more room. His head was cut from ear to ear and his face cut vertically, with the skin being pulled down, exposing all of the bones of his face and jaw. His forehead, eye orbits, nose and top jaw were taken apart, reshaped and put back together with a red frame attached through a series of wires and bolts. The frame was left in place for nine weeks to encourage the bone to grow, as well as pull the existing facial bones forward. The bones were moved forward a millimeter a day by turning the screws on the frame, a process which allows new bone to grow and then to consolidate. Mrs Mitchell said: ‘So far he’s endured more than 50 general aesthetics and has been through so much. ‘But since his recent surgery he loves his news face. When he saw it for the first time without the frame I think he would have done cartwheels if he could. ‘It was a massive boost to his confidence. ‘And now, a few months on, he doesn’t even associate himself as having Apert syndrome. ‘But what’s incredible is the way he’s taken everything in his stride. We can’t thank all the doctors and nurses enough who’ve looked after him. '
target: Billy Mitchell was born with Apert syndrome - a rare condition that causes malformations to the skull, face, hands and feet .
  Youngster has endured a series of major operations to correct deformities .
  Surgeons cracked open his skull before piecing it back together again .
  Seven-year-old had a titanium frame drilled into his skull for nine weeks .