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AMA

My baby has Fibular Hemimelia

4 replies

Csx99 · 28/12/2020 10:20

My son was diagnosed with Fibular Hemimelia, he is 5 months old and will be having his right leg amputated next year.

This condition is rare (1 in 40/50,000) so thought I'd do an AMA to answer any questions anyone has about this kind of disability Smile

OP posts:
NaughtipussMaximus · 28/12/2020 10:23

I’m sorry to hear that. Is he in any pain? I’m not familiar with the condition.

MeanMrMustardSeed · 28/12/2020 10:25

That must have been a massive shock to you, OP. Have you both been looked after well? Has it been hard to get appointments with Covid around? How are you feeling about your son’s operation next year.

I think it’s really good that you’ve been willing to post this, as the amount of people it may help now and in the future is massive.

Csx99 · 28/12/2020 10:25

His condition, in simpler terms, he is missing his entire fibula bone, his tibia is half the size is should be (this causes quite a big leg length difference) and he has a very small foot that's twisted and only has 3 toes. Luckily he's not in any pain Smile

OP posts:
Csx99 · 28/12/2020 10:30

It was a huge shock! I'm a 21 year old FTM, I had a miscarriage in my first pregnancy so naively felt relieved once I got through the first trimester, would have never expected this!

It was a very difficult time, I was extremely depressed during pregnancy but as soon as he was here all those worries disappeared, I knew we'd get through it.

In a weird kind of way, I'm looking forward to the amputation - it will be the start of a very new chapter for him Smile

There's been huge Covid delays which have been frustrating but we're seeing his specialist tomorrow (for the first time in person!) where we can finally have a good chat about his future surgery.

I hope this can help someone - I couldn't find anything on mumsnet when I found out about his condition so it would be nice if this reaches someone who needs it, even in the future!

OP posts:
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