Straight into limbo land

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.

'Very alarming'
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 .

"It is not a disability," she stresses. Footballer Steven Gerrard is among the ranks of famous people born with talipes, which also include actor Dudley Moore, film-maker David Lynch and poet Lord Byron.

Crumlin is the only hospital that provides ante-natal counselling for parents of children diagnosed with talipes. The treatment procedure is explained and the mothers meet the team in the Ponseti clinic. Kelly’s department is also developing a website – childrensorthopaedics.ie – which will include information for parents of babies with talipes.

Meanwhile, apart from a second Ponseti clinic in the National Children’s Hospital, Temple Street, in Dublin, others have opened around the State over the past few years, including ones in Cork, Galway, Limerick and Letterkenny.

"We have all met and we are all doing more or less the same thing – we have come up with a national policy document," adds Kelly.

Daunting prospect
The prospect of a newborn's tiny feet being manipulated and the legs encased in plaster casts for at least six weeks, followed by the wearing of boots attached to a bar full-time for a minimum of three months, and then at night up to the age of four, is upsetting and daunting for any parent.

Barry recalls how Louis was “perfect” at his birth – except for his feet. “They were totally bent in – at 45 degrees angle.”

She was told to bring Louis to Temple Street children’s hospital when he was six days old. He had plaster casts put on both legs, from the tip of the toes to the top of the thighs.

“They put it on and squeeze the foot and at that point the baby does cry,” says Barry, “but the plaster dries very quickly and after 10 seconds they let go.”

The next week she was back in with him and the process was repeated – he had 11 casts in all, with a tenotomy done at eight weeks. His was done under general anaesthetic but it can usually be done under a local.

Then he went into “boots and bar” at 12 weeks old. He wore them 23 hours a day until he was about 10 months old. Once he started pulling himself up, the medics said his time in the boots and bar could be reduced.

The key is to be persistent with the boots and bar in the early months, says Barry. “Parents’ hearts are breaking – particularly if it is your first baby. They are so soft and supple and all you want is them in their cosy babygrow and cuddle them up, rather than this clunky big heavy plaster cast and then these boots and bar.”

Louis is now at an age where he is asking why he has to wear the boots and bar at night and Mia just tells him otherwise his feet will turn in.

“It is really tough at the beginning of treatment,” she adds. “Now we don’t think about it.”

For more details, see talipestogether.com