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Henry’s story – from birth to boots and bar

Henry, born with bilateral talipesHi there, I’m Sarah and I work at Alder Hey. I’m also a mum to twins – Henry and Melissa. Henry was born with bilateral talipes (club feet) and has been a regular visitor to hospital ever since. I wanted to share Henry’s story in a series of blogs to help other parents in similar situations, and to raise awareness of the condition.

Henry has recently had surgery, but first I wanted to tell you about how we got to this stage.

Henry and Melissa were born in October 2006 and I had been given an antenatal diagnosis of bilateral talipes (club feet) at my 20 week scan. Henry was transferred from the Liverpool Women’s Hospital to Alder Hey at one week old to begin treatment on his feet, known as the Ponseti Treatment with Mr Garg, one of Alder Hey’s Orthopaedic Consultants.

Henry had weekly physiotherapy on his feet with Peter Beirne after which a plaster cast was put on each leg right up to his nappy – this ensured the gradual manipulation of his feet were maintained. After about seven repeated weekly casts (at which point we knew all the staff in the plaster room!) Henry was admitted for an operation to nick the tendons at the back of his ankles and then went back into plaster for three weeks.

Boots and bar

When the final plasters were removed, Henry’s feet were pointing in the right direction which was a huge relief, but his skin was dry and flaky from all the plaster casts. He was fitted for boots and bar that were to be worn 23 and a half hours a day for approximately 3 months – we could take them off Henry wearing his boots and barfor bath time. Looking back I think that was the hardest part of his treatment. Trying to get his little feet into those small boots when his skin was red raw and he was crying was really hard. But we had been warned that in order to maintain the position of his feet we had to make sure the boots and bar were on at all times. We received a lot of bruises from the boots and bar, from Henry thrashing his legs around while changing his nappy and trying to dress him!

Eventually the boots and bar only needed to be worn at nap time and at night time and that continued until Henry was four years old. The boots and bar never seemed to bother Henry – as a baby and when older, he would still move his legs a lot with the bar on and as a result developed really good stomach muscles (and managed to scrap the paint off the walls by his bed!).

When he was able to stop wearing the boots and bar, it felt strange initially, as he had been having some form of treatment since he was one week old. Putting his boots and bar on had become part of Henry’s bed time routine. After everything Henry had been through though, it was nice thinking his treatment had finished and been successful.

In 2011 Henry and Melissa started school, and it was not long after that we noticed that Henry was struggling to get his right heel down on the floor. We saw Mr Garg again and were advised to try repeated plastering again on the right leg. Henry obviously didn’t remember the staff in the plaster room, but they remembered him and made a fuss over him – Henry looked forward to his weekly visits. His plaster also proved popular in school as his friends were able to draw on it!

Taking the next steps

After the plasters Henry went to wearing splints – ankle foot orthosis (AFO) – that were moulded to fit Henry perfectly and he got to pick the design (red with footballs!!). Henry wore his splints during the day, and this continued until late 2012 when he was reviewed again in Mr Garg’s clinic. His left foot was fine, but his right foot was still not right – we were told to stop using the splints and see how things went over the following months, but it was made clear that the next stage would involve surgery.

Henry’s story continues next Friday. Sarah is telling hers and Henry’s story to help raise awareness of Bilateral Talipes. If you enjoyed reading this, or if you are a parent in a similar situation, we’d love to hear from you in the comments section below.

Your comments

  • You forget how much Henry and you all have been through. He amazes me every time I see him and how at ease he is. Especially now with his cage on. I know Niall is looking forward to running round with his cousin again. Maybe Henry could right how he is feeling. And Sarah you are an amazing mummy. We are all lucky to have you x x

  • What a brave boy Henry is. It must have been very difficult to get used to wearing such constricting contraptions. Brave Mummy too Sarah thanks for sharing your story, can’t wait for the next blog.

  • Brilliant Sarah, this has never been a burden for Henry (or any of you) and I hope other people share you story as it’s a success! This has never been a disability for Henry&everyone should understand that there’s fantastic treatment available. Henry is a star xxx

  • What a little trooper Henry is and how strong you have been. My Granddaughter was treated at Alder Hey for dislocated hips. She was in a harness for 3 months and we found that hard. Henry and your family have endured so much more. Good luck in the future. Aren’t the staff at Alder Hey wonderful!

  • A lovely story Sarah.
    Well done Henry! Looking forward to the next part of the story 🙂

  • There is a little girl in my reception class, also a twin, with the same condition. I will mention this blog as I think they’ll be grateful to hear of a story similar to theirs. Henry is a little star! And the staff at Alder Hey are amazing!

  • It’s an amazing story Sarah and it’s all down to you and your determination for Henry to lead a ‘normal’ life. Your tenacity is inspiring! Never give up because the results are there for all to see. Henry and Melissa are a credit to you! xxx

  • I just had my operation and I thought that was hard!wow

  • […] story continues next Friday, and you can read part one here. Sarah is telling hers and Henry’s story to help raise awareness of Bilateral Talipes. If you […]

  • You are an inspiration Henry. My little grand-daughter is a patient of Mr. Garg and it is fantastic that you and Mum are sharing your experiences with other families whose little ones will go through similar surgery to what you have had.
    Keep smiling!(and reading)

  • […] story continues next Friday, and you can read part one here and part two here. Sarah is telling hers and Henry’s story to help raise awareness of Bilateral […]

  • […] story continues next Friday. You can also still read part one, part two and part […]

  • My son, Jack has talipes like Henry and has been in boots and bars for almost 2 years. It has now come to light that Jack has a vertical talus which requires surgery to correct. An operation is scheduled for the 12th Dec with Dr. Garg. Fingers crossed all how well!!

    Great story Sarah and thank you for sharing.

  • Thank you for sharing Sarah. I am due a little boy this month with unilateral talipes so it’s useful for me to hear about other people’s experiences. I had not heard of this condition before and have found the most valuable views and advice have been from the parents who have children born with bi/uni lateral talipes so thank you again x

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