The mum of a girl successfully treated for hip dysplasia has written a book about their experience for other children receiving the same treatment.
At only two weeks old, Athena was sent for a scan of her hips. The results set her and her mum, Alexa, on an emotional journey through two research studies.
Athena is now eight years old, and is just as active as her friends - running, climbing trees, even doing yoga moves on her paddle board.
As a thank you to the team, Alexa has written a book about her daughter’s experience. It’s called ‘Athena’s magic trousers’.
Southampton Children’s Hospital now give it to families who have a child with the condition who needs surgery, to help them prepare.
What is hip dysplasia?
Hip dysplasia is a condition where the ‘ball and socket’ joint of the hip does not properly form in babies and young children. The socket is too shallow, meaning the top of the thigh bone is only held loosely or not connected at all. It can affect either one or both hips.
Without early treatment, hip dysplasia can lead to long-term issues such as problems walking, pain and osteoarthritis in the hip and back.
A doctor, midwife or nurse does a ‘hip check’ soon after babies are born, and again when they are six to eight weeks old. This involves wiggling the baby’s legs to check if the hip feels unstable. If they have concerns, they send the baby for a scan to look at the hip bones.
Athena’s journey
When Athena was two weeks old, she had the hip check. There was a slight click when her legs moved, so as a precaution she was sent for a scan. It showed she had severe hip dysplasia, with no contact at all between the top of the thigh bone and hip sockets on either side.
After looking at her scan, Professor Nicholas Clarke, who was leading the team’s hip dysplasia research at the time, simply said ‘recruit’.
“That one word changed the trajectory of her life,” reflects Alexa.
That was how Athena came to be part of her first research study. She wore a Pavlik harness, which holds the hips in a stable position so they can develop properly.
On a bank holiday Monday, Alexa removed Athena’s harness to find that one of her legs had gone limp and she couldn’t move it. She’d had a femoral nerve palsy - an extremely rare event where the nerve gets trapped.
Alexa called the team, who asked them to come to the hospital that day. After treating Athena, they said she would no longer be able to continue to be part of that study.
Instead, she was moved onto a new study. At 11 months old, Athena was put into ‘traction’, where she lay on a bed hanging from her feet for seven days. This was followed by a series of surgeries across the course of a year.
Alexa says people thought traction was ‘brutal’, but Athena actually quite enjoyed it. She acted like a circus performer, laughs Alexa, swinging from her feet or trying to do a head stand.
“The results of that study are coming out under Mr Alex Aarvold at the moment, and they are really positive,” says Alexa, “and I think Athena is an absolute testament the difference traction makes.”
Life-changing results
Alexa describes Athena as ‘the child that loves to climb things’.
They’ll go for a walk, and Alexa says if you can’t find her you have to look up, because she’ll be up a tree. She’s got her own paddle board, does gymnastics and has her own aerial hoop. Every week at school she plays competitive sports matches.
Every six months they visit the hospital for an X-ray. They can also ask Mr Alex Aarvold, who now leads the research programme, any questions. Last time Athena asked if she could go on the bouncy nets at Moors Valley Country Park, and he said yes. So she had a party there with 15 of her friends.
“Without this series of surgeries, she wouldn’t be able to any of this. By now, she wouldn’t be able to walk properly. By twenty years old, she would have to have a double hip replacement,” Alexa explains. “My little girl, she wouldn’t be able to be what makes her herself.”
“How do you say thank you for that? There are no words. They’ve changed her life.”
Giving something back
Alexa was so grateful to the team. She wanted to give something more as a thank you than the bottles of champagne she brought in after Athena’s operations.
“You are being looked after by the most incredible team, who instil such confidence,” she says. “They know what they’re doing, and the results show that.”
She decided to write a book about their experience. She employed a local artist to do the illustrations, which are all based on photos of Athena.
She hopes it’s a gentle way to prepare both parents and children for the treatment Athena had.
“As both a child and a parent, no matter how many times you are told what’s going to happen, nothing really prepares you for it,” she says.
The book is already being given out to parents and children at the hip clinic at University Hospital Southampton. Alexa is now adapting the book so it can be given out to patients at other hospitals.
It’s not just Alexa who’s given the team a thank you gift. Athena also wanted to give something back.
“She won a race in her sports day last year,” says Alexa. “She got a medal, and she gave it to Alex.”
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