Born with Bilateral Knee Dislocation and Bilateral CTVE

Blog » Personal Stories » Talipes / Clubfoot

Willow was born with Bilateral Knee Dislocation and Bilateral Congenital Talipes Equinovarus also known as talipes or clubfoot. She is a very rare case; being 1 in 100,000 for her knees and 1 in 1000
for her CTEV.

She’s been through months of casting throughout her early years, weekly hospital visits, which have now turned into 6 monthly check ups/fitting for new splints. She had bilateral tendon release on both knees under General anesthetic at 3months old, and has had two tenotomies on both feet/ankles.

We initially were under Southampton, but I made Willow get referred over to Chelsea and Westminster being a very rare/complex case. I do feel we are under the best care now, and the past year or two she’s
gone from strength to strength since seeing Denise and the Team!!

She wore the boots/bar for 23/7, then down to 18hour wear, and now to 14hour wear overnight. During the day she has worn AFOs before and now she is in KAFOs daily! And honestly these have given her the opportunity to walk independently!

She learnt to ‘pull to stand’ at 18 Months, done daily physio at home with myself (Mumma) to help strength and balance, learnt to walk with a Nimbo frame given to us by local physio team, and now at 2 years 5months she can walk independently whilst of course wearing her orthotics (KAFOS). Still daily physio to do and much more to come no doubt! But I’m sure she will smash it all, like she’s already proven!! Casting phase, boots/bar, KAFOs!  Her legs are weak, and she cannot walk without her KAFOs. So I’m forever thankful to the team who make these! (John Florence Ltd)

One determined/strong/independent little lady/warrior!! Nothing stops her!!

We didn’t and still don’t know the full outcome for Willow and what the future holds, but we’ve always just taken each day as it comes and look how much she’s achieved already! (With support for her legs) A consistent routine has worked perfectly for us, in regards to when putting on KAFOS and boots/bar with milk time before bed etc!

Yes there are some really tough days/weeks and months.. but those seem so small now! Clubfoot doesn’t define Willow.. she just has interesting story to tell when she’s older.

HUGE Thank you to Chelsea and Westminster Hospital, John Florence Orthotics Ltd, Solent NHS Physio. Also to the main ‘Man’ Ponseti himself for the treatment of Clubfoot which is still being provided today.

And thank you to you Steps for organising events, raising awareness, and providing support and knowledge as always.