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Amelia’s story: Growing up with PFFD

Amelia outside Sheffield Children's
11 January 2022

This is Amelia. The girl who has ‘just done things a little differently, and in her own way.’

Amelia is now four, but at a scan before she was born, it was discovered that her femur – the large bone in your thigh – was only about half as long as expected.

It wasn’t until she was born in 2017 though that Amelia was diagnosed with unilateral PFFD (proximal femoral focal deficiency). This is when the end of the femur closest to the hip is too short or not completely developed. It’s not uncommon that, like in Amelia’s case, the hip joint is also not well developed.Amelia by mini bear

Sheffield Children’s is a specialist orthopaedic centre and because of this, Amelia and her mum Amy were referred from their local hospital in Leicester to be cared for here.

Amy said: “After hearing such great things we were happy to travel that little bit further. We met Mr James Fernandes – Consultant Orthopaedic Surgeon – when Amelia was around six months old. This was to familiarise ourselves with the condition, the hospital and ask any questions we had.

“We got to enjoy Amelia being a baby as nothing could be done until she grew a little bit more and became a little more active.”

To begin with the difference in Amelia’s leg length was small – around three or four centimetres – but this would grow as she did. By the time she was an adult, this was predicted to be around 24cm. One year on from their first meeting with our orthopaedic service, Amelia was fitted for her first prosthetic.

Amy said: “She could stand up, run, walk and dance around! There really was no stopping her, which was exciting for us all. Nothing has really held her back; Amelia has just done things a little differently, and in her own way.”

In a follow up appointment, Amelia had an MRI, CT scan and fluoroscopy to look at her hips as PFFD often affects their stability. These scans showed that Amelia would need major hip reconstruction surgery and metalwork placed into her hip to keep it aligned.

Amy said: “Amelia’s hip operation was in October 2020 and even though it was in the middle of COVID restrictions, the hospital was great, and everyone was so accommodating despite the struggles they faced.

“The staff on Ward 2 and Burns were all fabulous and made me and Amelia feel very comfortable.”

Amelia was in a spica cast – this is used when the entire upper part of the leg needs to be immobilised during recovery – for six weeks after the operation. She then came back to have the plaster removed and was non-weight bearing for a further six weeks before needing to re-learn how to walk and starting to see our physiotherapy team.Amelia in cast

Six months later, Amelia and her mum Amy were back at Sheffield Children’s and needed to make a decision about whether to amputate or undergo further operations to lengthen her leg.

Amy said: “This was a difficult decision that took a lot of time but as Amelia is in the ‘grey area’ with her leg discrepancy – it was around 15cm difference at this point – it meant that either was an option. But lengthening her leg would be a long journey with 15 to 20 more operations and we decided that for us as a family, Amelia, her school and social life that we would favour an amputation.”

In November 2021, surgeons at Sheffield Children’s carried out a Symes procedure, which leaves the heel as a stump to optimise a prosthesis which is added later.

“She’s done amazingly well with the help of the physios (especially Becky), all of the Orthopaedic team and Mr Fernandes, the Theatres team, the nurses and health care assistants at Sheffield Children’s that made our hospital stays that little bit better.

“I could never fault the hospital or any of the staff we have met along our journey so far and look forward to meeting many more on our journey ahead.”

Thank you so much for sharing your story Amelia, we look forward to seeing you too.

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