Straight into limbo land
Club foot is more common than many realise, yet parents lack information about the condition
When Mia Barry went in for the 20-week scan on her second child she was told something was wrong with her baby’s feet. They thought it was talipes, the medical term for “club foot”.
“I was freaking out,” she says but they told her they didn’t know how bad it was and that she should come back at 30 weeks for another scan.
Ten weeks later it was confirmed her baby had talipes in both feet and that it appeared quite severe. It wasn’t life-threatening and there were very good treatments, she was assured, but that was the extent of the briefing she got.
“It was straight out into limbo land – terrifying.” The only information she could glean on the condition was on the website of a big UK charity, Steps. There was nothing about treatment in Ireland.
She was attending a private consultant and she felt his attitude to her questions was that since it wasn’t life-threatening, she should stop asking about it. “In other words, stop worrying, get a life . . .”
While she appreciates medical professionals see more serious abnormalities, “anything that is not normal when you are expecting [a baby] is very alarming”, she points out. “In my world, it is massive.”
Having experienced this “huge gap” in information between first hearing her child had talipes to treatment beginning, Swedish-born Barry resolved to do something about it for other parents. Within months of the birth of her son, Louis, in September 2009, she founded a support group, Talipes Together
Between 60 and 70 babies are born in Ireland every year with talipes, a congenital deformity of the foot that occurs in twice as many boys as girls and affects both feet in 50 per cent of cases.
For about 90 per cent of babies worldwide born with talipes it is what’s called an idiopathic condition – the cause is unknown and there is no associated condition, explains consultant orthopaedic surgeon Dr Paula Kelly. However, in Ireland an estimated 20 per cent of cases have a co-existing condition, such as spina bifida, various syndromes and other neuro-muscular disorders.
The Ponseti method
The good news is that the treatment of talipes in Ireland has improved “dramatically” over the past eight years, since the adoption of the Ponseti method. This is a manipulative technique that was developed by Dr Ignacio Ponseti at the University of Iowa back in the 1960s but it took the orthopaedic world almost 40 years to accept its effectiveness.
Before the introduction of Ponseti, the treatment for talipes was serial clamps and stretching and about 60 per cent of babies went on to have radical soft tissue surgery at the age of about six months, says Dr Kelly of Our Lady’s Children’s Hospital in Crumlin, where a Ponseti clinic opened in 2005.
With the Ponseti method, where a series of weekly plaster casts are put on the baby’s legs and then the Achilles tendon may be cut (a procedure known as a tenotomy), the need for significant surgery at age six months has dropped to 2 or 3 per cent of cases.
‘Not a disability’
A recent review of seven year olds showed that the surgery rate is up to 16 per cent by that age. However, these are not regarded as “failed” Ponseti treatment, but rather surgical adjustments to the foot, explains Kelly, who reassures parents that in the long term, children born with talipes function normally .