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When Angelica (31) and Mikael Lundin (36) from Stockholm, Sweden, found out in 2014 they were pregnant through IVF, they were overjoyed.
But the couple were devastated when at their 20-week scan they were told their daughter’s left leg and foot weren’t forming correctly.
In December that year their baby girl, Penny, was born with fibular hemimelia. It’s a rare condition where children are born with a short or missing fibula, but it can also affect other bones in the leg, foot and ankle.
Penny’s fibula was missing, and her left foot was underdeveloped with just four toes.
At first Angelica feared she’d never be able to see her daughter run, play or smile like other children.
After intensive research and consultations with specialist doctors, Angelica and Mikael decided to have Penny’s left leg amputated when she was just 13 months old, as her leg and ankle were too weak to develop or undergo bone lengthening treatments.
But just eight weeks after her amputation Penny was up and walking, and Angelica says her little girl hasn’t stopped moving since.
This inspires her every day to be proud of her differences.
“I felt devastated at first because I knew nothing about her condition and wasn’t sure if I’d ever see her run or even smile,” Angelica said.
“Having Penny’s foot amputated was one of the hardest decisions we ever made. But the more I read, and all the families I spoke to, made us sure of our decision.”
Fibular hemimelia occurs in about one in 25 000 births. In most cases the cause is unknown but it’s thought to have something to do with the activation order of the genes that form the leg during the early formation of the limb.
Treatment of the condition depends on the severity of the case. In cases where the foot doesn’t form, amputation is considered the best option.
Penny’s operation went smoothly, but Angelica said it was difficult to see her daughter in hospital in the first few days after the operation as she was too young to communicate how she felt.
“The first couple of nights at the hospital were rough. She was only 13 months old, so I couldn’t ask her if she was in pain or just bored or tired,” Angelica said.
“It was a bit tricky with the morphine at the start but after just two to three days Penny was herself again. We continued with just regular paracetamol for about a week.
“Right when she was about to walk she had her amputation. So basically, her condition never had the chance to slow her down.”
Angelica hopes to spread awareness of Penny’s condition and help other parents and families affected by it. She says Penny inspires her every day.
“I honestly think she gets her positive attitude from her own heart and soul. She was born a happy kid. We’re sure to encourage her to believe in herself every day, but she’s taught us more about life than we ever could.
“She’s taught me not to be ashamed, that being different is a good thing and that positivity comes from a safe environment and a loving family.”
Angelica shared her words of advice for other families who might be going through a similar situation.
“Try to learn as much as you can for your own sake, but also to be able to answer all the questions from your son or daughter.
“I also think it’s important to show them that what Penny lost in a foot, she gained in independence.”
