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Henry’s story part two – preparing for surgery

Henry, preparing for his bilateral talipes surgeryAfter everything that Henry’s been through with his feet it’s hard to think of him having to go through more treatment but he is experiencing pain in his right leg now which he has never complained about before, so we know that something needs to be done.

We had an appointment with Mr Nayagam, Consultant Orthopaedic Surgeon and we were introduced to Rose Davies, Orthopaedic Nurse Specialist. Mr Nayagam explained the surgery they feel Henry should have would be to put an Ilizarov frame on his leg. It was explained that the frame would be put on surgically and would stay on his leg for approximately four months followed by two months with his leg in plaster – so we’re looking at six months of treatment. I guess compared to the four years he had the Ponsetti treatment six months is nothing, but it seems a long time especially as he’s now an active six year old who very rarely sits still for longer than ten minutes.

Mr Nayagam and Rose explained the procedure to Henry and us and recommended that we go away and look at information on the internet which I did. I found a number of parent blogs but they were all from America (which is why I’m now writing this!) but from the information I found it was clear that the Ilizarov is hard work but does have good results.

Henry is starting to come around to the idea of surgery, especially since his twin sister was in Alder Hey to get her tonsils out – seeing the attention Melissa got I think he’s keen for the operation as he now equates hospital time with presents and ice-cream!

We had a follow-up session in the Physiotherapy Department where we met Sharon Atherton, Physiotherapist with Rose Davies, Orthopaedic Nurse Specialist. They showed Henry a doll which had a frame on its leg to give him an idea of what the frame would look like. I had shown Henry some photos I’d found online but I think he was surprised to see what it would actually look like. They also gave Henry an actual frame to hold and told him he could take it apart if he wanted – big mistake!! It was taken apart in minutes – really hope he doesn’t try that with his real frame!

Final preparations and familiarisation

It was a useful meeting with Rose and Sharon as it was a chance to ask the practical/silly questions that had been running through my mind like: how will he get up stairs? What do you do about clothes? How will he get about? Henry had also made a list of questions he wanted answering: Will it itch? Will I still be able to play? Will I be able to go swimming?

We were given a tour of the Physiotherapy Department and shown the hydrotherapy pool which Henry would be using post operation – that put a smile on his face – I had to hold him back to stop him running and diving in there and then! We were also taken up to the orthopaedic ward so Henry could see where he’s likely to go after surgery – as soon as he saw that each bed had its own TV and DVD he was sold!!

He’s now going round telling everyone about getting a frame on, having his own TV and that he’ll be off school for weeks!! Talking to family about the operation the easiest way I’ve found to describe the procedure to people is to say it’ll be similar to braces you have on teeth that get tightened to correct wonky teeth, but that the frame does the same thing but with bones.

Got his surgery date now – eek! All of a sudden this is real.

Henry’s 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 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

  • I have been looking forward to the 2nd part of the story and loved reading it. Feels like a special way of learning about Henry’s condition and his fight to combat the hardships his condition has brought into his life. Thanks for sharing henry and Sarah xx

  • […] 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 Talipes. If you […]

  • My daughter might be having this procedure done. I want to connect with other parents that have had their children do through this. My daughter is now 15 and has had 14 surgeries on her leg. This has been recommened by our doctor. She is 7.3 centimeters shorter on her left leg due to bone cancer.

  • Thank you so much for sharing your story. My son has been diagnosed with LLD (leg length discrepancy) and after 3 years of shoe raises the doctors have decided to do this procedure. Just like you I have done thousands of research but all I can find are cases from USA, absolutely nothing from within UK.
    I’m conscious this is not going to be easy, any feedback from you would be tremendously appreciated.

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