Man with a plan makes walking a step closer for Cavan

Seven-year-old Cavan Kirkham-MacCallum has hemimelia, a rare congenital condition which means he was born with certain bones missing in his arms and legs.
Seven-year-old Cavan Kirkham-MacCallum has hemimelia, a rare congenital condition which means he was born with certain bones missing in his arms and legs.
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A Yorkshire surgeon is helping give a young boy who was told he might lose his arms and legs, the hope of walking unaided. Catherine Scott reports.

Six years ago doctors warned Cavan Kirkham- MacCallum’s parents that he may have to have both of his arms and legs amputated. He was just one year old.

Now, aged seven, Cavan is a step nearer walking unaided thanks to a surgeon at Sheffield Children’s Hospital.

Cavan suffers from hemimelia, a congenital condition which means he was born with certain bones missing in his arms and legs. Fibular hemimelia affects around 1 in 40,000 biabies, and for it to occur in both legs is very rare. In Cavan’s case, he has hemimelia in both arms and legs. His parents have researched, but not found any other cases of hemimelia in all four limbs. His mum Bernadette says he is 1 in 600 hundred billion

The condition was first picked up by doctors when Bernadette went for her 20 week scan; however doctors were unable to tell precisely what it would mean for the youngster. When he was born, six-and-a- half weeks prematurely, it was discovered that all four limbs were affected.

His right arm was missing the ulna bone and a hand, while his left arm appeared normal, but two fingers were joined together and he had limited movement due to bones being fused in his elbow. The bones in his lower left leg were twisted and he had talipes (club foot) in his left foot. His right leg was severely twisted and bent below the knee, and his right foot and lower leg needed to be amputated shortly after birth.

Devastated but determined to do the best for their young son,Bernadette and Cavan’s dad, James, travelled extensively around the country and beyond speaking to doctors about the best plan of action for their son, with some suggesting that they amputate all four limbs.

“We travelled up and down the country from Oxford to Northumberland to speak with specialists, but they had never seen anyone like Cavan before,” explains mum of four Bernadette. “We went over to America to meet a couple of specialists, who are recognised as leaders in the field of lower limb orthopaedics. The plan was one of part amputation and part limb reconstruction for his legs. It would have required lots of operations over a number of years and the family moving to America, plus the costs of surgery there are very high.”

Then through STEPS, a national charity that supports adults and children affected by lower limb conditions, the family was put in touch with Mr James Fernandes, a consultant orthopaedic surgeon at Sheffield Children’s Hospital. Mr Fernandes talked them through a strategic plan of treatment for each of Cavan’s limbs, which to some extent matched the plan put forward by the American specialists. It meant that the family did not have to move from their UK home and uproot Cavan and his older brother, Joey now 13. Instead the youngster, originally from Burnley, began his treatment with an operation to amputate his right leg when he was two years old, at Sheffield Children’s Hospital.

A year later he returned and underwent a procedure to reconstruct his left leg by realigning his tibia and fibula which were crossed over. A plastic surgeon also released the webbed fingers in his left hand.

The surgery, which was often very painful for brave Cavan, was followed by weekly check-ups for 12 months, with Cavan and his parents making the 100-mile journey from Northampton where they now live.

“Mr Fernandes is the best in the country at what he does and there is no one that can match his knowledge and experience. Cavan has a great relationship with him and he trusts him completely,” says Bernadette.

This month, Cavan and his parents headed back to Sheffield Children’s Hospital where he has recently undergone an operation on his left leg to lengthen a bone in his ankle and put his foot in a better position. A device known as Taylor Spatial Frame has been placed around Cavan’s leg, which allows adjustments to ensure correct alignment as the bone heals and grows. The process will mean that Cavan will once again become a regular visit to Sheffield Children’s Hospital over the next 12 months to make sure his foot ends in the right position. During his treatment the family stays at Treetops House, The Sick Children’s Trust in house facility at Sheffield Children’s Hospital. But that will not be the end of surgery for Cavan, who also has a younger twin brother and sister aged five.

“We know that Cavan will be visiting the hospital for a long time, and he’s due to have another operation at 12 and possibly another at 16. He’s so brave when comes into the hospital, and he’s aware that it’s a long process, but he knows that Mr Fernandes will do his absolute best for him.”

Mr Fernandes said: “At Sheffield Children’s, we are known internationally for our orthopaedic work and every year we work with many children having limb abnormalities.

“It is important to speak with parents and patients so they are aware of all the options. When I see Cavan and his parents, they let me know how’s he doing and what he wants from his treatment, and together we work towards the best possible outcome for him. His condition is very complex but each operation gets Cavan closer to where he wants to be. He is an absolutely fantastic patient and a pleasure to work with.”