My baby is having his leg amputated this year AMA

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Just that really, would love to answer any questions you have and hopefully this thread may be useful to someone else going through the same thing in the future

Oops x-post!

@EvilOnion
Ahh Thankyou, yes I don't think there's anything really on mumsnet (or any other sites either). I'm lucky that I've since connected with other mom's through social media such as Instagram and Facebook so managed to find lots of advice on there at the time I needed it!

He will be getting his prosthetic leg around 8 weeks post-surgery and learning to walk with that. We will introduce it slowly at first, a couple of hours a day etc and then build it up to him wearing it full time when he can walk etc

That sounds hard, but why do you think people want the gory details? How will that help you?

Who said anything about gory details?! OP is offering information which might help others going through a similar thing, or people who just want to understand more. It’s a generous impulse, and it reflects badly on you to try and insinuate something sinister.

OP - you sound really brave and positive, which is so impressive. I hope the operation goes well for your wee boy. How long is is recovery likely to be?

No questions but I think the athlete Oscar Pistorius had the same congenital defect. Notwithstanding his conviction for murdering his girlfriend (!) he overcame his disability and had great professional success. I really hope your own little boy will be able to forge ahead and do whatever he wants to in life. Good luck with the surgery.

Hope it goes well OP, do you think you'll be able to get him involved with sports etc as he grows up? I'm thinking of all those amazing paralympians and wondering how accessible things like that are

I’m not sure I have any questions but wanted to let you know that tiktok has a thriving amputee algorithm which I have been inadvertently put onto. (No idea how tiktok is so accurate but amputation is a possibility for me). There is a toddler on there with a lower leg amputation who seems to be getting on amazingly. I don’t actually follow their accounts but if you search on tiktok you will probably find them and it may be useful.

Good luck.

Hopefully as well as helping others in the future this thread may also help you if people can give advice/tips/share experience?

Just wanted to say having this operation at such a young age will be fantastic for your little boys quality of life. I have a family member with a deformed leg and they are an adult now but feel their life would be so much easier if this operation had been given as standard as a baby/child. Children who are given prosthetics at a young age adapt fantastically.

@CloudFormations
Thankyou so much. Not sure why that would be someone's first thought either!

OP - you sound really brave and positive, which is so impressive. I hope the operation goes well for your wee boy. How long is is recovery likely to be?

Thank you for your lovely words. If all goes well and he doesn't develop any kind of infections then we should only be in for a few days and I've been told by his consultant that he should be back at nursery within a couple of weeks - however I'll probably keep him off for a little longer if I feel necessary!

I will be going back to university to complete my degree in September and they have been amazing about it so I'm lucky that they'll be giving me as much time as I need off with him.

Hi OP will your DS be going to nursery or preschool when he's older and do you think him having this condition will change what he does for his early years education?

Hope it goes well OP, do you think you'll be able to get him involved with sports etc as he grows up? I'm thinking of all those amazing paralympians and wondering how accessible things like that are

Yes definitely! When he's around 5/6 years old he will get a blade prosthetic along side his 'regular' one which will be better for him to do sports in and I have also found an amputee football association not far from where I live that he can go to from 3 years old too which will be lovely for him

vm.tiktok.com/ZMe5y6p22/

Think it was this one

Hi OP will your DS be going to nursery or preschool when he's older and do you think him having this condition will change what he does for his early years education?

He will actually be starting at a private nursery in September - we are hoping his amputation will be around summer time but can't be certain due to Covid delays, we're hoping it'll be done by September but if not my university and the nursery he'll be attending have both been amazing and very understanding.

I'm hoping it won't change anything as with his prosthetic he should be able to do just about anything that any other children his age can do but I suppose we'll see when it comes to that time

@CovidCorvid
I'll definitely check it out. I do follow a few amputees on TikTok and other forms of social media and it really does help so much

Children who are given prosthetics at a young age adapt fantastically.

Completely agree and this is what I have been told by many consultants and health professionals. It will be the 'norm' for him, he'll never be able to remember life before his amputation so hoping he will adapt a lot better

OP, I hope everything goes well for you and your lovely boy.

There's another poster on MN at the moment whose daughter is going through this - I think her daughter is about 8 now. Can anyone remember the name of the thread?

I think he'll be just fine op, you sound like a great mum.

I have done lots of volunteering and working around young children and although other children will be curious at first overall they tend to be incredibly understanding and accepting of others.

I hope the operation goes well

How do you fit such a young child for a prosthesis? Are the prostheses made of very light material like carbon fibre and Kevlar? Do you have any idea how often the prosthesis will need to be changed or refitted as your DS grows?

I used to ride horses with a teenage girl who had a high leg amputation - no prosthetic limb was possible I think. She managed very well on a horse and could go riding out on horse tracks in fairly rugged country though she always had either a groom or other riders with her.

I don't know if this is any help OP, you seem to be coping admirably, but my friends grandson had to have a leg amputated following meningitis when he was 9 months old. He is now 7 and copes really well with everything. Runs and plays just like all the other kids and as he has really known no different he is a very happy child.

Wishing you and you DS all the very best.

So sorry to hear that OP. [flowers to you] All the very best to you.

I know someone who had to have an amputation of one leg (born with a deformity, i think some form of cerebral palsy) and she's coped well with it being done in adulthood but she told me she'd have preferred to have had the operation as a baby/child.

oops sorry

No questions but I hope all goes well, I love your attitude. Your DS is lucky to have you.

Sounds like you’ve made a fantastic decision for him OP, from what has been said on this thread I hope my parents would have done the same for me at such a young age had I been in the same situation. I can’t believe how quickly he’s expected to bounce back. Children are amazingly resilient!

A few questions, I hope they’re not insensitive:

1. Is he less likely to suffer things like phantom limb pain given his neural pathways are still forming?
2. Have you had to put much thought into clothes and practical things? Or will you just go with the flow?
3. Will he be able to travel in a normal car seat immediately after discharge? If not, how long?

How is a child going through an operation, gory?

Grow up and stay off this thread.

Wish you and your little baby all the best op

Hi OP - I used to work with a girl who had a baby with the same condition 6/7 years ago (we are only FB friends now so I will get some details wrong!). She was a relatively young mum but coped admirably and I'm sure you will too. Her son had his leg amputated too and has done brilliantly. From his point of view he has never known any differently. He regularly gets a new 'leg' to run around with as he grows, and he's never had any problems keeping up with his peers. I think she's quite involved in FB groups to do with the condition so you will likely run into her at some point. I will send you a message!