She was excited to find out the gender of her baby, but her 20 week scan left her worried
Finding out the gender of a baby is an exciting time for any soon-to-be parent.
From choosing names to buying tiny outfits, mums and dads can start picturing their little one as they prepare for their new life together.
But that wasn’t the case for Leia Johnson. The expectant mum was given terrifying news at her 20-week scan.
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Leia, from Cheadle Hulme, was looking forward to discovering whether her child was a boy or a girl when she learned the baby’s foot hadn’t fully formed.
The mum-of-three was told the infant either didn’t have a foot or would likely need an amputation very young, leading to her seeking a second opinion.
Leia, 39, paid for a private ultrasound which showed the unborn tot had four toes, giving her hope that everything would be fine.
But when she gave birth to her daughter River-Lucia, it was quickly discovered the youngster had a condition so rare it affects just one in 40,000 births.
Fibular hemimelia is where a baby is born without part or all of the fibula, one of the bones in the lower leg. This can lead to differences in leg length and foot development, making it difficult for a child to walk.
Leia, who owns a cleaning business, can recall the moment she was given the news. “When everyone else gets excited about finding out whether it’s a boy or a girl, we were given health scares,” she told the Manchester Evening News.
“The first thing I did, it’s sad to say, was to turn to the internet. I typed in the condition and I clicked on images.
“It’s quite sad to think back, but I did do that. I had never even heard of it. I wasn’t getting normal images. The first image I came across was a child with a really short leg. I was thinking, ‘What’s my child going to look like? How are they going to cope?’”
Though River-Lucia's legs weren’t much different in length as a tot, as she grew, the youngster needed to wear a splint and adapted shoes.
But with one leg longer than the other, she would frequently fall over, often coming home from school with plasters on her knees.
“In between learning how to walk, up to the age of six she had adapted shoes and a splint to help her walk straight,” Leia said.
“She would be falling over and that’s when we knew we had to make a decision. She had plasters on her knees coming out of school, and we didn’t want to leave it until she was too old. We decided it was the right time to make her legs the same length.”
When River-Lucia was six, Leia was asked whether they wanted to go down the leg-lengthening route or amputation.
Put off by the idea of endless surgeries, River-Lucia opted for amputation, undergoing the life-changing surgery on July 24, 2024.
Remarkably, the schoolgirl astonished doctors and nurses by walking with her new prosthetic leg almost immediately after the procedure.
“She’s never complained, not really cried,” Leia added. “I feel like I slept through what I would have believed to be the worst journey of our life together, woke up and now I’m at the good bit.
“I was leaning more towards the prosthetic leg route but she made the decision herself. She was only six at the time.
“She knew what she wanted from the start. She said she would rather have a fake leg – but my fear is that when she gets older, she’ll ask why she went down that route. It’s so hard as a parent. It was heartbreaking.
“Just because she has a prosthetic doesn’t mean she can’t join gymnastics or go running. Yes, it will be harder for her, but it doesn’t mean she can’t do them.
“She’s dealt with it so well; she didn’t scream, she didn’t cry. She was more upset the first night because she didn’t like being in hospital.
“She was up, walking on her frame with her physio team 17 hours after surgery. She was asking to walk to the toilet. The way she dealt with it and her positivity was mind-blowing. I was so proud of her as a parent because she didn’t complain.”
Leia says she was bracing for the worst following the now seven-year-old's operation but has been blown away by her resilience.
“She’s had one little down day where she cried, but she couldn’t explain why she was crying,” the mum added.
“I was waiting for her to have all these experiences, I was on eggshells, couldn’t close my eyes and drift off to sleep. I thought I needed to be awake for her when she starts crying
“When she got her prosthetic leg, she wanted to put a pattern on it and she chose pandas.
“She was doing all her first steps in the first week in one go – walked up a ramp, decking, up and down steps, on the grass and on pavement. She went beyond their expectations.”
Leia and the rest of the family have recently moved into a bungalow to better accommodate River-Lucia as she recovers from her surgery.
The mum is now on a mission to raise awareness of her daughter’s rare condition. “I really want to raise awareness, enlighten and increase knowledge about this condition,” she said.
“If River's story can help just one person, it will be worth it. I am immensely proud of what my daughter has achieved to date.”