Devastated parents reveal their heartache at watching their child suffer from talipes and how paediatrician's vision saved years of agony
'ITHOUGHT I was going to have a baby who couldn't walk. I was devastated." It was at her 20-week scan that Helen Clancy discovered all was not well with her baby. Halfway through her pregnancy, her world was turned upside down when medical staff inf
ormed her the baby had talipes – also known as club foot.
And not long ago, little Jamie Fletcher would have faced years of painful surgery and a lifetime of limping and pain as doctors attempted to correct his inwardly-turned feet.
But thanks to the method pioneered by paediatrician Ignacio Ponseti, he is, at the age of 21 months, indistinguishable from any other toddler. Ponseti died on 18 October at the age of 95, but his legacy lives on worldwide for children like Jamie.
As the toddler bounds between the toys in the Sick Kids physio room, his angelic blond curls spring out from his mum's attempts to flatten them down for the camera – and his bare feet look like those of any other child.
Watching him fondly, Helen, 40, admits that her spirit teetered when she first heard her son's diagnosis, but as soon as she held him, her worries melted away.
"Until I saw him, I couldn't understand what they meant. I had pictures in my head of him having his feet on back to front, but once he was born I just didn't notice – he was just Jamie."
Ponseti first suggested half a century ago that, instead of repeated surgery, children with club feet should be treated with a series of plaster casts to stretch and realign their muscles, tendons and joints.
That would be followed by a period wearing boots connected by a bar, which splay the feet outwards.
Since he first proposed the new therapy, the condition has been renamed talipes, from the Latin terms for the ankle and foot. But outside the US, the treatment remained the same until very recently.
It was only three years ago that the Sick Kids opened its own Ponseti clinic, as physiotherapist Sarah Paterson explains: "There were some other centres throughout the UK that were beginning to provide the Ponseti technique, and we had parents beginning to do their own research and ask for it.
"It reduces the need for general anaesthetic and overnight hospital stays, and the outcome long-term for children's feet is much improved. They tend to get fewer problems as they grow older, their feet aren't as painful and they have more flexibility and stronger feet."
Helen, a full-time mum from Clovenstone who is separated from Jamie's dad, says the treatment was, if anything, harder for her than for her son. "I was broken-hearted at first because I feared he was in pain every week he had to get his ankles twisted," she says.
"But, towards the end, he wanted the weight and the comfort of the cast; he didn't like it when it was taken off.
"I've got one of his casts, I kept it. I'll torment him with it and show it to his first girlfriend and say 'You used to be in this!' But he's really content now, he knows its bedtime when the boots come out."
The reactions of strangers made it tough in the early days, however.
"Jamie had the boots on for 23 hours a day at one stage and it was hard going because when I had him out people would stare, which I found upsetting," Helen says.
"I know it looks strange to see a baby with a bar on his feet, and if you see a baby with two casts on their legs it's not a nice thing that automatically comes into your head.
"I'd hear them speaking behind my back. The odd person would say 'What's that on his feet, dear?' and as soon as I said 'He's got club feet' they'd just say 'Oh, is that how they fix them nowadays?' It was quite refreshing that they'd asked."
Most importantly, his prognosis is now good – talipes no longer has to be a major hindrance.
No-one knows that better than Glenn Miller, 41, whose son Ryan has also been treated for talipes at the Sick Kids.
He and partner Elaine Johnston, who live in Dalkeith, didn't know Ryan had the condition until he was born, but it was less of a shock for Glenn than Elaine – as he was born with the condition himself.
Glenn says: "I came from a family where I had talipes, and my cousin had cerebral palsy, whereas Elaine came from a family where there were no physical deformities and it hit her like a ton of bricks.
"She had a 27-hour labour, and he had problems with his legs and with his hands and he wasn't breathing properly, so he was taken away for 20 minutes. He had a tremor as well, so they said they would do chromosomal checks, so you're hit with that and your boy's feet are knackered. It was hard."
Glenn, unusually for a patient in the 1960s, had himself been treated with plaster casts, and reassured Elaine during those difficult first days.
"I said to her, 'He's got two feet and he's got 10 toes and both his legs are the same length, so you know at least he's only going to have a small limp if anything.'"
And there is barely any lasting legacy of his own condition. He says: "I used to get plastered up to the hip for a year. I don't think I had any surgery but I can't remember any of it; I can't remember lying in my casts on the floor, and I think it'll probably be the same for him.
"If I get really tired when I'm running you see my feet turn in a bit but I know lots of people who didn't have talipes whose feet do that."
Ryan, now two-and-a-half, had one operation, to release his Achilles tendon, which made his parents realise how lucky they were not to have to contend with repeated surgery.
Glenn says: "When he got his Achilles done, Elaine couldn't even go through the double doors to the surgery. Getting plasters done isn't too bad, it's quiet, you're just sitting with people wrapping bandages round. But when you sign the consent form for surgery, there's something about knowing you're giving permission to say, 'Yes, take my kid into an operating theatre and possibly to go under anaesthetic'. That's probably the only time I've fretted."
Ryan still wears his boots and bar at night, and is full of fun and charm. Even with the boots on, he can scoot about the floor and even clamber on the furniture.
And without them, Glenn says, there's just no stopping him. "If you go to a play park, if anything, he's running faster and more than any other kid. I don't know if he's hyperactive or if he's making up for lost time. He is very strong in his abdomen and his thighs. Plaster casts are quite light, but you're so small when you're born, so I think it's strengthened him. He can run and run."
Solution that proved worth the long waitIGNACIO PONSETI, below, was born in Minorca and raised in Barcelona, graduating in medicine the day before the outbreak of the Spanish Civil War.
In 1939, he fled to Mexico in anticipation of the Second World War, and from there to Iowa, where he joined the university orthopaedic faculty.
In the 1950s, he devised a non-surgical form of treatment for babies with "club foot" or talipes. But it was not to gain popularity outside the US until the 1990s, when results of long-term studies of his earliest patients proved its success.
Ponseti came out of retirement and held clinics in Iowa well into his 90s.
About 50 to 60 babies are born each year in Scotland with the condition. Thanks to Ponseti, babies with talipes have the affected foot or feet manipulated and plastered into the correct alignment.
The plaster is replaced every week for four to eight weeks. Some also require an operation to release the Achilles tendon.
After that they are fitted with a pair of boots connected by a bar, which keep their toes pointing outwards. The boots and bar are worn round the clock for 12 weeks and then every night until the age of four.
• www.ponseti.info 