As three-year-old Laila Edmondson runs around her garden in the May sunshine, her mum Jenna beams with pride – and she has every right to.
Before her daughter was born, shocked Jenna, 29, and husband Shaun, 35, had been told a rare condition meant the fibular bone in her left leg would be missing and she would have just three toes on her foot.
It meant the couple had to make the agonising choice between years of multiple operations that might not fully fix the problem – or removing her foot.
So, at 19 months Laila became an amputee – yet her parents have never regretted the life-changing decision they made for their daughter.
“We decided an amputation was the best way for Laila to lead a normal life,” says Jenna.
“And seeing her now, racing around on her prosthetic, going to nursery and simply being a typical little girl, I know we made the right decision.”
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Jenna was 20 weeks’ pregnant with Laila when a routine scan at hospital revealed that her baby’s leg and foot were not developing normally.
“When the sonographer said the baby was missing a bone in her leg and two toes, I was so shocked, says Jenna.
“The room was silent as Shaun and I tried to take in what she’d said.”
The couple, from Windermere, Cumbria, endured an agonising six-day wait before Jenna was scanned again at the Royal Manchester Children’s Hospital by a consultant who found she had fibular hemimelia – a condition believed to only occur in one in 40,000 births.
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Jenna says: “We were told the condition was just one of those things, but it wasn’t an indicator she had any other health problems, which was a huge relief.
“I was asked if I wanted to terminate the pregnancy, but I loved this baby, so that was never an option.”
Jenna and Shaun, who work at a pub together, were referred to a limb-loss surgeon who explained there were two options after birth.
They were amputation of the foot or multiple leg lengthening surgeries beginning at age five until Laila was in her mid-teens – with no guarantee her legs would end up the same length.
“It was a lot to take in, we knew we faced a huge decision,” says Jenna. Laila was born in August 2017 and Jenna admits she felt nervous about seeing her daughter’s leg for the first time.
“I didn’t know what to expect, or how I’d feel.
“But when she was placed in my arms, I realised this was just who she was. She was still perfect,” says Jenna.
After meeting the surgeon again when Laila was three months old, Jenna and Shaun came to their decision.
“We didn’t want her childhood and teenage years interrupted by surgeries which would impact on her going to school, doing sports and leading a normal life.
“We felt the younger Laila lost her foot, the easier it would be for her to adapt, because she wouldn’t know any different.
“Of course, we couldn’t look into the future and know how Laila would feel when she was older.
“Would she resent us for making this irreversible change to her body?
“We had to just make the best decision we could for her and trust she’d agree.”
Laila’s surgery took place in January 2019, when she was 19 months old.
Jenna and Shaun were supported by charity Steps, which helps children affected by lower limb conditions and their families.
“Watching her be put to sleep before her operation was very hard.
“She was so upset, not understanding what was happening.
“But we had amazing support from Steps and felt confident we were doing the right thing” says Jenna.
“She’d only just learned to walk. But we knew with a prosthetic she’d be much more mobile”
Following a three-and-a-half-hour operation, Laila was returned to her mother’s arms, her leg heavily bandaged.
“At home, when her dressings came off, she was upset. I knew she realised her foot was gone but those emotions passed quickly, and I was amazed how quickly I got used to it too.”
In April 2019, Laila was fitted for her first prosthetic and within two days she was up on her feet.
“We took her to Blackpool Zoo and she insisted on getting out of her buggy to walk around, it was an unforgettable moment seeing her so happy and confident,” Jenna recalls.
“She’s now on her fourth prosthetic and it will be replaced as she grows.
“She attends nursery, is very independent and because prosthetics are now so advanced, whatever she wants to do in the future, from running or dance to climbing, nothing will be off limits to her.”
The couple now have nine-month-old daughter Renley – and by setting up Laila’s Steps Fund they fundraise to buy prostheses for children in countries where funding isn’t available.
Jenna says: “We’re incredibly proud of Laila. She adapted so quickly to using a prosthetic.
“And seeing her active and happy, playing with her friends and baby sister without a care in the world, it just confirms that an amputation was the right decision for her and her future.”
- Steps Charity Worldwide offers support and advice ( stepsworldwide.org )