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AMA

My son has Fibular Hemimelia AMA

6 replies

FHmama · 15/12/2021 22:15

My 17 month old has a rare bone condition called FH and is having his right leg amputated soon. I would have loved to see one of these threads when I first found out so hopefully this can help someone else one day - but ask away Smile

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Hapoydayz · 15/12/2021 22:18

That sounds so hard on both of you. I hope you are ok. As it's Ama, is this something you have recently found out or was it from birth?

BHX3000 · 15/12/2021 22:19

When was he diagnosed and what were his symptoms / what made you think something wasn’t quite right? Or was it detected at a checkup?

I know nothing about Fibular Hemimelia. Will he able to have a prosthetic leg fitted?

Will or could the condition affect any other limbs or organs, or does it cause any secondary health issues?

FHmama · 15/12/2021 22:25

is this something you have recently found out or was it from birth?

When was he diagnosed and what were his symptoms / what made you think something wasn’t quite right? Or was it detected at a checkup?

I found out at my anomaly scan whilst I was pregnant. They couldn’t officially diagnose anything until he was born, had X-rays etc but they were 99% certain of his condition from around 23+ weeks onwards

Will he able to have a prosthetic leg fitted?

Yes, around 6 weeks after his operation he will be measured for a prosthetic then should only be waiting a couple of weeks! I can’t wait until he gets his leg and can learn to walk🦿

I know nothing about Fibular Hemimelia

The simplified answer is that his right leg is shorter than his left leg, thus creating a leg length difference. This is because he is completely missing his tibia bone and his fibula is extremely short as my son has a severe case of FH. He also has major foot deformities.

Will or could the condition affect any other limbs or organs, or does it cause any secondary health issues?

No, luckily it is a completed isolated incident. Some cases people have it in both legs, but my son only has it in his right leg.

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FHmama · 15/12/2021 22:26

He was due to have his amputation in October, but it was cancelled due to staffing issues and rearranged for November, then he got Covid so it was cancelled again Sad so we are now waiting for a January date, 3rd time lucky 🤞🏼

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BettyMacDonald · 15/12/2021 22:32

Hello, I don’t have any questions but just wanted to say that my SIL’s nephew had his leg amputated when he was 18 months after a road accident. He’s 20 now and having a great old time at university. I wish you all the very best and hope the surgery can go ahead as soon as possible x

FHmama · 16/12/2021 12:05

@BettyMacDonald Thankyou so much. I am glad to hear he is doing well, I love reading positive stories SmileStar

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