My baby is having his leg amputated this year AMA

[Csx99]

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

I hope everything goes well for your little boy, CSX99, and I too think you sound like a great mum.

What an amazing mother you are. No questions here, just wanted to wish you both well for the future. Your son will have many obstacles in his way ( we all do, just different ones), but with you by his side, the world is his oyster.

I grew up with someone who had this but their parents wouldn't allow amputation, it honestly ruined their life and the moment they were able to make the decision they had an amputation and wish they had it as a child. Wishing your son a speedy recovery .

Just want to add to the 'good lucks' and say you sound fantastic!!

Csx99 I have a very good friend who was also born with this condition. She has always had the prosthetic limb and it has never held her back. I was a guest at her wedding, she made a beautiful bride, and now is the mother of three little girls. Plus she has a very successful career. Don't worry, your little boy will be fine - and he will never know anything else, so will have nothing to compare it with.

Wow, OP - no question - you are just amazing! You will be an inspiration to your child as they will be to you x

My son has a (different) limb difference and yes the early days are tough. There are so many body positive groups and individuals on SM now but I remember at the time feeling very alone. So good to raise awareness that our babies are still awesome and NOT to be pitied or seen as less than the sum of their (possibly missing) parts

You and your lovely boy are going to be fine - I think i'm saying this more for my sake than anything, because you seem to be dealing with this like an absolute superstar mother. You may not be stoic all the way through this as you expect, but you're going to be fine. I wish you all the very best.

Csx99 - different situation but my LO had surgery as a baby for a hand/arm difference. All went very smoothly on the day and our children are amazing - they adapt so well.

Stay strong, I'm sure your boy will go far.

The way you are coming across on here I have no doubt if your baby boy is anything like you he'll face this and overcome it.

Good luck for the operation and best wishes on getting your degree completed.

And thanks for sharing.

My ds also has a genetic condition that affects approx 1 in 77-100, 000 and it's amazing how deep you have to search to find people who have the same condition. But once you do the groups small enough to feel a real part of it and not just a random member of millions!

I hope it goes well OP. I think starting this thread is a great idea and a very generous thing to do. When my DD was ill I certainly benefitted from previous accounts of what to expect and how parents dealt with the issues that come up –I'm sure this thread will be very useful for others in the future.

I saw a talk by this wonderful young woman recently. She’s designed a 3D prosthetic limb that grows with the child. Currently she only does arm / hands but you could keep an eye out as they intend expanding their range.

www.exphandprosthetics.com/faq-s

Sorry that should say 3D printed

Just wanted to say that I hope the surgery goes ahead on schedule and please stop back here and let us know how it went. Alex Brooker made a good documentary on having limb deformities if you haven't seen it, having people in the public eye being successful and having similar disabilities is often helpful for youngsters

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?

Not really sure on the ins and outs of how they’re made etc but the fitting is very simple, just essentially taking a mould of his stump once it’s healed and the cast is off after around 6 weeks post-op

Yes it’ll have to be adjusted as he grows and he’ll then get new legs etc.. I’ve been told to expect to never go over 2-3 months without an appointment throughout his entire childhood as obviously they grow a lot :)

1. Is he less likely to suffer things like phantom limb pain given his neural pathways are still forming?

This was definitely my main concern and we’ve been reassured that the likelihood of phantom pains is small but we’re not really sure

2. Have you had to put much thought into clothes and practical things? Or will you just go with the flow?

He’s a chunky boy anyway so he has wider fitting and stretchy clothes for comfort which will be helpful when he has a cast on etc but when he gets his prosthetic leg clothing shouldn’t be an issue but we’ll cross that bridge when we come to it!

3. Will he be able to travel in a normal car seat immediately after discharge? If not, how long?

Oo, that’s something I actually have no idea about! I have an appointment in June to sign the consent forms and to ask any further questions so that’s one I’ll write down

Thankyou so much for all your lovely comments, I appreciate every single one of them! It'll be a difficult journey but it'll be so worth and I feel incredibly lucky to have such a special little boy

OP, you sound awesome. I have no experience of this specific disability but I can relate to having a child with a disability and how your expectations (not sure that's the right word) for them aren't the same as you thought they'd be when you got pregnant.

Will the nhs provide “decent” prosthetic legs or are you likely to end up having to pay for better ones?

Thanks for answering my questions Csx99

Will the nhs provide “decent” prosthetic legs or are you likely to end up having to pay for better ones?

I doubt we'd ever be able to afford paying privately so we would have to rely on the NHS - I've heard very mixed opinions on these prosthetic legs so I suppose it's something we'll find out over the years

Hi my son had 'clicky hips' and had several ops and a cast on, which is no way close to having a leg removed, I just wanted to say that the length of time your baby will be in surgery will be the longest time ever and just be prepared for the stupid comments (several people asked if I had dropped him or if he had fallen).

Babies are very resilient and he will cope amazingly well-take care of yourself x

Is this the same sort of condition Oscar Pistorious has? I worked with a guy with a prosthetic leg, he had the same thing as Pistorious, also had his leg amputated when he was around 1 yr old. He regularly ran marathons on a blade sort of leg in about half the time my one and only marathon took me.
Good luck to you op, you sound like you'll do an amazing job of supporting your son. I hope you've got people to support you too, I'm sure the next few months will be quite emotional.

My foster son plays cricket for a county level disability team. There is a person in his team who plays cricket, bats and bowls with one arm. They sometimes play another team who have a brilliant player with a prosetic leg. When he walks around with trousers on I have even heard a parent ask how can he be in team with no disability. They could not tell he had a prosetic leg. I hope your son will be like this person and have a great life with his new prosetic leg. Get him into sport if you can. So rewarding for kids.