Clinicians at Alder Hey Children’s NHS Foundation Trust have used a pioneering technique to perform leg-lengthening surgery on a young boy. Nine-year old Alfie from Northampton is the first person in the UK to benefit from this procedure.
Alfie was born with a condition called fibular hemimelia, where the development of the leg is affected making his right lower limb shorter than his left. This had caused balance problems when walking, running or playing sports and his condition placed extra stress on his hips and back. As he continued to grow, the difference in leg length became more significant and noticeable and he was given orthotic boots with a raised sole to help even out the difference.
When Alfie was seen at Alder Hey in early 2024, he had a 4cm difference in leg length which was estimated would reach 6cm by the time he was fully grown.
After considering the various treatment options Alfie and his family made the decision to go ahead with extramedullary femoral lengthening surgery.
Leg lengthening procedures are carried out for a range of reasons, including differences present at birth, those caused by injury or infection, and for some other medical conditions. Traditional UK practice has relied on methods that use an external frame fixed to the bone from outside the leg.
The pins and wires needed to secure the external fixator to the bone are often painful and difficult to manage during the lengthening process. Intramedullary lengthening nail procedures have been described for many years, and use a lengthening rod inside the bone canal, allowing the bone to be cut and gently separated so new bone can form (a process known as distraction osteogenesis) while offering a more comfortable and effective recovery.
Unfortunately, because children have open growth plates and narrow bones this procedure has not been available for younger children due to the risk of damaging developing joints and impairing future growth.
As an alternative, surgeons in the US developed the technique of positioning an intramedullary lengthening nail on the outside of the bone, but still inside the leg. The procedure was assessed and considered by Alder Hey’s orthopaedic team and the clinical devices evaluation group as an appropriate treatment option for younger children who are still growing.
Mr Nick Peterson, the consultant orthopaedic surgeon who performed the procedure in March said: “Extramedullary lengthening will transform how we can treat and care for younger children who need femoral lengthening procedures. A lengthening nail is placed on the surface of the bone but underneath the muscles of the thigh, and over time this motorised telescopic nail slowly pulls the two bone ends apart, at around one millimetre each day. As the gap widens, the body naturally fills it in with new bone tissue. This allows the bone to grow longer in a controlled way and avoids the need for an external fixator with wires and pins connected to bone through the skin. This new procedure seems to reduce pain, infection risk and scarring and offers a more comfortable recovery.”
“The morning after his operation, Alfie was determined to get up early and was walking around with a Zimmer frame. We were told that if he’d had the conventional external frame, he wouldn’t have been able to move around so soon. He stayed in hospital for four nights, and the care he received was exceptional. Every member of staff we met provided outstanding support and kindness. Alfie no longer needed pain relief just seven days post-op. He then had weekly X-rays to monitor progress, and he has already gained 3cm in leg length which we are delighted with. The whole process from operation to recovery has been really smooth and the care exceptional. Alfie has such a positive attitude and has never let it hold him back but this procedure will be life-changing for him.”
Laura, Alfie’s Mum
Mr Peterson continued: “Further surgery may be needed for his shinbone in the future as Alfie continues to grow, but we’re delighted with the results. Extramedullary lengthening will transform how we can treat and care for younger children who need femoral lengthening procedures. We’re really proud to have brought this procedure to the UK which has helped other centres begin offering the same life-changing treatment across the country, meaning many more children will benefit in the future. A huge thank you to everyone involved in Alfie’s journey – our orthopaedic theatre team, specialist nurses, physiotherapists, my consultant colleagues and all the staff behind the scenes. Most importantly thanks must go to Alfie and his parents for trusting us with his care. This truly was a team effort.”
Alfie said: “I’m really happy with my results and really proud of myself that I was the first in the UK. Hopefully, this can help other kids like me.”
Alder Hey performing the first three of these procedures in the UK has allowed other centres around the country to follow, with the same procedure performed in Sheffield and other procedures planned in Bristol and Southampton.