‘My toddler has been on NHS wait list for surgery over a YEAR – she will never walk unless she has the op’

A heartbroken mother shares her baby’s battle with congenital vertical talus, a rare foot deformity, raising funds for her surgery to enable walking.
the heartbroken mother shares her baby's battle with congenital vertical talus, a rare foot deformity, raising funds for her surgery to enable walking.
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A heartbroken mum has shared her baby’s battle after being born with an arched foot and it’s likely that she will never be able to walk.

When Olivia Foley and her husband, Joe Sheppard, found out they were expecting after trying for two years to conceive, they were overjoyed – but as their newborn arrived, they suffered every parent’s worst nightmare.

The couple, aged 30 and 34, were left “distraught” as they noticed that their baby’s right foot hadn’t formed properly and was turning upwards due to a condition called congenital vertical talus, a rare foot deformity.

READ MORE: Mum left ‘heartbroken’ as one twin dies and second diagnosed with rare condition

the heartbroken mother shares her baby's battle with congenital vertical talus, a rare foot deformity, raising funds for her surgery to enable walking.
Olivia, Joe and Sylvie-Rae. (Picture: Jam Press)

Sylvie-Rae, who began treatment at only three weeks old, will need to go through invasive realignment surgery before her second birthday – otherwise, there’s a high risk she will never be able to walk.

“It’s a very real possibility we’re facing that she may be disabled for life and that’s what keeps us up at night,” the HR assistant, from Bristol, told NeedToKnow.co.uk.

“We had never heard of this condition before and were gutted to know that she had the ‘worst case scenario’ of it.

“I was terrified of my little baby going through anaesthetic and operations at such a young age, but we were also fearful of how this was going to impact her later on in life.”

Joe, a lorry driver, and Olivia claim that nothing was picked up during regular pregnancy scans and that the deformity came as a shock.

heartbroken mother shares her baby's battle with congenital vertical talus, a rare foot deformity, raising funds for her surgery to enable walking.
Sylvie-Rae in hospital. (Picture: Jam Press)

Sylvie-Rae, now one, was rushed away for x-rays and further tests within minutes after being born – leaving the first-time mum unable to truly spend this precious time together.

She said: “I got my first cuddles, but there were numerous doctors around and we were then taken to NICU for multiple opinions – so I never got to savour this moment.

“As I had only just given birth, emotions were already high and so I was extremely panicked when I saw her foot, as her toes were almost touching her shin.

“I had so many thoughts and fears running through my mind, it was chaotic.”

The family were referred to Bristol Children’s Hospital three weeks later, where the plucky tot’s diagnosis was confirmed.

She was placed in a full leg cast in a bid to “shift” the foot back into place, but after one month, this wasn’t successful.

Currently, Sylvie-Rae is able to walk assisted, but drags the affected foot while doing so due to a “rocker bottom foot” – the feeling of having a pebble or stiff object pressing in at all times.

While realignment surgery is advised before babies turn one, the parents are still on the waiting list and are anticipating a date, but are worried that this will come too late.

Olivia said: “It’s a very specialist operation and due to this, there’s a long wait on the NHS.

“So far, it’s been one year and we’re not any sooner to getting a date.

“If we go privately, it’ll cost up to £18,000, which we don’t have.

“But once she has it, it’ll allow for her bones to be realigned and kept in the correct position.

“Without this surgery, we know she will not be able to walk, so it’s life-changing.”

The family are now trying to raise funds, as well as awareness, with their story and have currently got £4,470 out of £15,000 toward the private operation on GoFundMe.

heartbroken mother shares her baby's battle with congenital vertical talus, a rare foot deformity, raising funds for her surgery to enable walking.
The GoFundMe page. (Picture: Jam Press)

For now, they’re doing all they can to help their baby’s condition and are hopeful for the future.

The mum added: “We’re doing daily stretches with her that were given by the physiotherapists, but this isn’t working, so surgery is the only option.

“I want her to have the best possible life she can and right now, we can see all she wants to do is walk.

“She’s trying so hard to get her balance and take those first steps on her own, and it’s heartbreaking seeing her constantly get knocked back down.

“But she’s our precious little girl and I know we’ll make it through this battle together, no matter what.”

Jam Press has contacted the NHS for comment.

READ MORE: ‘Trolls say I’m a bad mum and doctors warned I’d never have kids – but I beat the odds to raise my girls,’ says woman with rare condition

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