The first child in the UK to have pioneering surgery at Birmingham Children’s Hospital to support her spine using metal scaffolding, can now look forward to a long future and the possibility that she may be able to walk one day.
Five year old Rosie Davies had the 13 hour groundbreaking surgery at Birmingham Children’s Hospital last month – only the second time the procedure has been performed in the world.
Rosie, from Walsall in the West Midlands, is the only person in the UK to have the extremely rare spinal condition, spinal segmental dysgenesis of the lumbar spine, where the lower segment of her spine is missing. Her legs were folded up under the back of her thighs and she had very little feeling in her legs or the ability to move them.
Without the surgery, Rosie’s organs – which did not have the support of a complete spine – would over time compress against each other and she would have eventually died from organ failure.
Despite her rare condition, Rosie did have some feeling in her lower body. At eight months old she was able to move herself around adopting a commando style crawl suggesting that her spine and nerves were working after all.
Due to the complex nature of her condition, previous operations to straighten Rosie’s legs were unsuccessful. So Neurological and Orthopaedic Surgeons at Birmingham Children’s Hospital chose to use a technique only carried out once before in New Zealand, to repair Rosie’s spine and limit the fatal effect of her condition.
During the very complex operation involving a team of seven, Rosie’s lower legs were amputated where she had little or no feeling, and bone was taken from one of her legs and grafted to the base of her spine.
Two 15cm long rods were screwed in place – carefully avoiding the nerves – to create a type of scaffolding from the upper part of her spine down to the hip bone.
Consultant Neurosurgeon Mr Guirish Solanki from Birmingham Children’s Hospital, who was one of the three surgeons to operate on Rosie, said:
“We are delighted with the results of this operation. This is only the second time in the world that a surgical team has attempted to fix the thoracic spine to the hip side bones for a condition as rare as Rosie’s.
“This case was very complicated as normally children with this condition do not have a working spinal cord or nerves but Rosie did. So in carrying out this procedure we had to be extremely careful not to damage her nerves.”
Now one month post-surgery, Rosie already has more sensation in the upper part of her legs, which is a huge development and means that her parents can look at the option of prosthetic legs.
Mandy Collett, Rosie’s mum said: “As a family we can't thank the team at Birmingham Children’s Hospital enough. I know from talking to the surgeons that there were some very tough decisions that needed to be made as the surgery progressed, and I am grateful for their ability to work through difficult circumstances to give our daughter the best chance of reaching her full potential.
“Rosie has never considered herself as disabled. She decides what she wants to do, and finds a way to do it, overcoming any obstacle. She has always been very active enjoying dance, sport and playing with others. She is an exceptionally bright young girl who is above average academically.
“The only thing that Rosie has been unable to do is walk, which is her ultimate goal in life. After her operation and with the correct support we’re confident now that she will be able to find a way to do that - to some degree. She loves her older sister Mia dearly, and has always aspired to be like her. She always says she would like to walk like Mia one day and that Mia would teach her.”
Scott, Rosie’s dad, added: “We are delighted with how the operation went and the early signs have exceeded both ours and the surgeon’s expectations. Rosie has been through so much over the last few years and we hope now that this will mean a better future for our little girl and maybe a chance for her to walk in the future.”
Notes to Editors
- The three consultants involved in Rosie’s surgery were Mr Guirish Solanki (Consultant Neurosurgeon), Mr Ed Bache (Consultant Orthopaedic Surgeon) and Mr David Marks (Consultant Orthopaedic Surgeon).