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FamiliesHealthTop StoriesToddler With Rare Condition Has Both Legs Amputated – After Being Born With ‘Jelly Legs’ And No Bones In Her Shins

Toddler With Rare Condition Has Both Legs Amputated – After Being Born With ‘Jelly Legs’ And No Bones In Her Shins

An 18-month-old girl has had both legs amputated after she was born without bones in her shins.

Little Freya Gibbs was diagnosed with bilateral tibial hemimelia, which means she was born without shin bones, and her lower limbs were curved inwards.

Devoted parents Danielle and Michael Gibbs were warned their daughter would never walk and made the heartbreaking decision to have their little girl’s legs amputated.

Freya had both legs removed below the knee in an operation, and her parents hope it means she will be able to adapt to prosthetic limbs at an early age.

Now Freya is back to her happy-go-lucky self at home in Llandysul, Carmarthenshire, Wales.

Danielle, 27, a shop manager, said: “It was a hard decision to make, but we felt it was better to have both of Freya’s legs amputated and to let her get used to life without then from an early age.

“We could have tried to spend the next 15 years having endless painful operations, but we didn’t want to put her through it only for them not to work or for her to decide she wants an amputation anyway.

“This way she’ll never remember any different and we hope she’ll quickly adapt to life with prosthetic limbs.”

Freya’s parents didn’t know anything was wrong with their baby until she was born at 3.15am on September 7 2017 in Carmarthen, Wales, weighing 6lbs 8oz.

Doctors said she might have clubfoot but later they realised her legs were bowed and she couldn’t move them.

“Her feet were in an awkward position, her knees didn’t move and her legs were in a fixed position,” said mum-of-two Danielle.

Two weeks later she was diagnosed with bilateral tibial hemimelia in both legs – the deformity or absence of the tibia.

Further tests revealed she also had a hole in her heart – which develops at the same time as the leg bones do, while in the womb.

Freya underwent heart surgery in September 2018 – two days before her first birthday – at Bristol Children’s Hospital.

Regarding her legs, the family consulted specialists in Wales and America and did consider using metal pins, secured by cages, to stabilise her legs.

But the family say it would require 15 years of surgery, travelling to the USA, and still might not work, leaving her needing amputations in later life anyway.

“We’d come across a surgeon in Florida and he was very into the saving of the leg – using using metal pins and cages that go around the legs and he does quite a lot of surgeries doing that,” said Danielle.

“”We did look into it, but because Freya has no bone there at all in one leg and just a tiny bit in the other, it would have meant 15 years of painful surgeries.

“We’d have had to travel over to America each time for them and it might not work so the end result could be amputation anyway. There was no guarantees it would even work.

“We didn’t want to put her through that just for her at the age of 16 to turn around and say: ‘Do you know what? I want an amputation anyway’.

“It’s in the early stages, the children who have had the surgery aren’t yet adults so you don’t know how it’ll be when they’re adults.

“We didn’t want to take that risk on it when we knew if she had the amputation at this age she wouldn’t miss out anything in life and would not know any different.

“She’ll learn how to adapt to prosthetic legs and will have always done things that way.

“Kids bounce back. If they want to do something they’ll do it, rather than an adult struggling, the kids will get on with it.”

She had both her lower legs removed during a four hour operation at Cardiff Children’s Hospital on February 18.

Danielle said: “She was in and out on the same day.

“We knew it needed to be done for her.

“Her legs were starting to hold her back. She really wanted to walk and run about and play with other children.

“They’re all running around and she’s trying to keep up, crawling, we wanted her to be able to run around with them.

“When she came back to the ward and we saw her, I just ran over and cried. I was so relieved.

“She was already up and really alert. She came around from the aesthetic really quickly.

“She just wanted to be picked up and cuddled straight away.

“She was really happy.

“She’s not upset or anything. She’s her usual chirpy self.”

The family said they will always remember Freya with legs.

Danielle said: “Before her operation we took lots of pictures of her legs.

“We even had them cast in plaster cast – so we’ll always have her little legs.”

Now back at home, Freya has a follow up appointment to check the wounds are healing and four to six weeks after her op she will be fitted for prosthetic limbs.

She said: “Once she’s up and about there’ll be no stopping her.

“Nothing’s going to hold her back now.”

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