Kimberley's Story

Tell me a bit about you/your family?

Our family is made up of me, Kimberley, my partner, John, and our son, 14 month old Thomas.

We also have a crazy dog called Harper.

What is your/your childs' limb difference?

Thomas has left foot talipes, also known as clubfoot. 

When did you/your parents find out? 

We found out during an antenatal scan. Would have been around the 16-18 week mark. 

What help and support have you been offered?

When we found out originally at the scan, the information we got was extremely limited.

The staff said that he may just need a couple of casts, bit of physio.

They seemed quite dismissive of it.

We didn’t realise the extent of treatment until after Thomas was born,
and we met with his first orthopedic consultant. 

What are the positives about your/your child's limb difference?

Everything that involves his beautiful little feet is just that bit extra special.

Watching him crawl for the first time reduced me to tears and the same again when he started walking
along furniture and most recently using his walker.

There are times as a parent to a child with complex talipes that you wonder how they will manage,
adapt and cope.

Your mind is constantly worrying about if they will walk properly and be able to do the same as all their friends.

So when you see them doing those ‘normal’ things,
to you as the parent, they really do make your heart soar with pride. 

What negatives have you encountered?

It’s been a difficult journey. Watching casts being put on your child is scary and overwhelming.

You all have to adjust as a family.

Then there are the comments - we had so many people, including professionals,
ask ‘what happened’ when they saw Thomas’ cast.

We always made sure our reply started with ‘nothing happened, he has talipes’.

People can be very judgemental but we do appreciate for a lot of people that it’s something they haven’t seen before
and are blissfully ignorant to.

Then we found treatment at our local hospital just wasn’t working out.

Casts continuously slipping and then his leg starting to bow led to us researching other hospitals.

We now have an amazing team at another hospital who have honestly been incredible through the whole process.

We have a lot of travelling to do (around 3.5 hours in the car) which can be tiring,
especially when we were going for weekly cast changes.

Thankfully now Thomas doesn’t attend appointments as frequently so the travelling has eased substantially. 

Have you needed to have any procedures?

Yes, Thomas required a tenotomy.

This is where the Achilles tendon is snipped at the back of the heel in order to release the heel,
allowing it drop and then subsequently the Achilles tendon to grow back longer.

The Achilles tendon in clubfoot children tends to be tight and too short
which is why this procedure is required.

It’s needed to be carried out in around 85 - 90% of children with talipes.
Some hospitals perform it under local anaesthetic but Thomas’ was under general,

which is also very common.
It was hard taking him down to theatre and watching him go under but he managed it all so well. 

What is the best advice you could give to a family
who are pregnant or have just had a baby with limb difference?

Reach out and find support. Don’t sit there worrying about the what ifs and wondering what will happen.

We didn’t get any advice or even suggestions as to where to go to get more info and support.

But we would recommend Steps as the first port of call.

They have an amazing website with tons of information on,
including leaflets about treatment and the condition in general.

They even have a parent match-up support service where you can be matched up to another family
who have been through what you are about to go

through, and can offer advice, experience and a listening ear.
There’s also plenty of brilliant Facebook support groups.

Our favourite is Happy Feet Talipes New*. 

What advice would you give a kid with a limb difference?

It will all be okay. There is always a way around doing things,
and you will learn how to do things in your own way and your own time.

‘It does not matter how slow you go, as long as you do not stop’. 

Our facebook page for Thomas’ journey is
https://www.facebook.com/Thomas-His-Talipes-Tale-173992910103686/

My personal Instagram where I do post updates about Thomas as well is @miss.kimberleyjane