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  • Coping With Talipes

    12 February 2012

     

    Coping with Talipes

    How it Feels When your Baby is Born with Club Feet

    What is it like to have a baby born with talipes? Becky shares her story.

    Talipes (commonly known as Club Foot) is when the muscles on the outer side of the leg are weaker than the muscles on the inside of the leg so the feet turn inwards. 1 in 1000 babies is born with Talipes and it is most common in boys. There are different types of Talipes and my son Hugo has Bilateral Talipes meaning both feet are affected. Some babies might only have one foot affected; others might have slight talipes and only need physiotherapy.

    When we found out that our son Hugo had Bilateral Talipes at a routine scan, the sonographer hadn't come across the condition very much and explained it as "pigeon foot". My husband and I looked at him blankly and I immediately burst into tears as my "perfect" baby was no longer perfect. At the same time we were told that Choroid Plexus Cysts had been found on our baby's brain and this could be a sign of Downs syndrome or something much worse called Edwards Syndrome (where 95% of the time the child doesn't survive past the age of 3 or 4). We had to wait an agonizing four days for an appointment with a specialist. At the following scan we had five different doctors with us and our consultant immediately put us at ease, had a good look at our baby and said that the Choroid Plexus Cyst had disappeared. There were no other abnormalities apart from his feet but we had no idea how bad they would be until he was born.

    We went away from the hospital happy because the worst case scenario wasn't to be and his Bilateral Talipes was treatable. I still felt it was unfair that I wasn't going to have a normal newborn like I did with my daughter, but I enjoyed the rest of my pregnancy and soon became used to the idea of having a baby with Talipes.

    To correct talipes they now use the Ponseti Method where possible instead of operating. This consists of casts and boots with a bar to keep the feet in place to stop relapse. When Hugo was just five days old he was put into his first set of casts, his feet were scored a 6 (6 is the worst, 0 is a normal foot). He had four weeks of casts changed weekly, our consultant said it was 50/50 that Hugo would need a tenotomy, a small operation where they cut the tendons and then the baby stays in casts for another three weeks. Amazingly Hugo didn't need it and even skipped two casts so only ended up needing four casts. He is now in boots and bars which have just been fitted. He will spend 23 hours a day in them for the next three months. After the three months Hugo will need his boots and bars on every night and nap time for the next five years.

    It makes day to day life a bit different for him. When he was in his casts he had weekly baths at the hospital and during the week at home he would have a top and tail wash every other day. Now he's in his boots and bars he needs footless romper suits and dungarees so finding clothing has been difficult; any item with poppers to make nappy changing much easier. I was told he shouldn't be in any pain but may be in a bit of discomfort and during the first week he was extremely unsettled; not sleeping just crying.

    Talipes shouldn't affect Hugo in any way in the future, he will be able to crawl, walk and sit at all the normal stages of development just like any other child. As an adult, there should be no side effects to having had Talipes.

    Becky spoke to Emma Waight, a PhD researcher for NCT and fashion writer.

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