My two year old wears a prosthetic leg AMA

[FHmama]

He was born with a condition called Fibular Hemimelia and subsequently underwent a lower leg amputation in February this year.

People are often curious so ask anything you'd like ☺️

That sounds like a tough journey for you all.

How would you like parents to respond when their offspring loudly ask what's wrong with your little boy's leg (if it is obvious that he has a difference)?

How did you cope emotionally? Especially with the amputation? I hope he’s doing really well now :)

Does he manage well physically?

I imagine due to growth he requires a new size every few months or so. Does he resent hospital visits or find them ok? He is young and won't know any different in terms of learning to walk I assume?

Likely a question for when he older, but I know the bog standard NHS prosthetics aren't great. Will he be able to get a blade on the NHS or the ones with additional knee/ankle movement? Any idea what they cost if you need to go private for better prosthetics?

Personally, I hate it when a parent shushes their child and pulls them away. Makes me feel like it's this bad secretive thing that can't be discussed. I don't mind how parents want to respond to their own children when they ask questions, but personally I think it's best to use it as a chance to educate your child.

I've even had a parent laugh out loud whilst shushing their child before which I thought was incredibly rude.

I've had alot of children say out loud to me 'why does your baby only have one leg' and I just say he was born differently and that's okay. I wouldn't want to scare a child with the thought of having surgery to remove a leg as I don't know what's appropriate in their parents opinion.

Honestly, I didn't cope well at all. Which I think would be very surprising to people who know me, as from the outside people thought I was fine. But I spent a lot of sleepless nights full of worrying and crying.

It didn't help that his surgery was cancelled twice between October - December 2021 and eventually happened in February 2022 so there was a lot of being in a limbo which I found very distressing. Then he had a lot of infections post-surgery so it was all so mentally draining.

But 10 months on life is just amazing now and those hard days feel like a blur. ☺️

Yes! Even before his amputation (when his right leg was only half the size of his left leg and he had a tiny, twisted incomplete foot) he always found a way of doing things! The only thing he couldn't do obviously was walk.

But he received his first prosthetic leg in August and took his first steps just 3 weeks later. Now he doesn't stop!

ah I don’t have any questions but wanted to send you and your little chap positive vibes x

Well he only got his first prosthetic leg in August, they are able to change the size of the foot without changing the full prosthetic and also add lengthening blocks in to add a short amount of length before getting a completely new leg.

We've already had a new foot but probably won't be measured for a new prosthetic until our appointment in February.

At first, every time he saw someone with a covid mask (which reminded him of the hospital) he would sob his heart out. If we went through the doors of the hospital he would scream and would not let go of me. However once he started to realise that the worst was over with (ie no more pain during these visits) he soon started to love all the attention he gets from the doctors there! 😂 and he loves his prosthetics centre as it has lots of toys haha.

Yes he only ever learnt how to walk on his prosthetic so it's all he'll ever know in terms of walking.

He will get a blade prosthetic leg when he's a little bit older, around 5-6 years old. No idea of the price of private prosthetics, I am really hoping that adult prosthetics will be a little bit better once he's at that age but who knows.

Thankyou! 😊

No questions but just wanted to thank you for starting this thread and helping educate other parents.

I hope this is not too intrusive but does the bottom of his leg get sore where the prosthetic attaches?
Also, how do they stay on?

I met my husband when we were both studying for a prosthetics and orthotics degree 😃 We practiced on a lot of professional patients but never had any paediatric patients.

Does your DS ever see other children with prosthetics when he attends clinic?

Thanks OP you sound absolutely lovely and I'm sure your positivity and openness will rub off on your DS. I am also visibly disabled and am very happy to explain it to curious children, but often feel for their (needlessly) embarrassed parents.

How did you find out about his condition? Did you know at birth and were you able to make decisions about how to manage it? And how did you cope with that mentally and with the expectations of your family/friends?

I'm deliberately not googling here. I'm also asking because my son was diagnosed with a neurological condition and managing my own/other people's expectations has been difficult at times

The bottom of the stump doesn't actually get sore, but the rest of his leg does - as the sock, liner, leg etc can make him be quite sweaty and it can cause rashes. But as long as we change the sock a couple of times a day to a clean one then it isn't too bad.

It stays on with a silicon sleeve that's attached to the prosthetic leg, it would be almost impossible to fall off (unless it wasn't put on properly!)

Oh that's so lovely 🥰

No unfortunately he hasn't seen any other child amputees yet. He saw a man with a prosthetic leg on and went running over to him saying 'look mommy, just like me' and 'wowww you've got a big leggy' It was a very sweet moment!

Yeah me too. You warrior!

Thankyou so much 🥰 yes I am mortified for the parents when one of the kid shouts 'look that baby's only got one foot' 😂 but most parents handle it so well!