Four-year-old Ivy Pittams has already defied the odds once, learning to walk despite being born with a rare form of spina bifida.

But now her parents fear she could lose that ability after a spinal operation she’s waited years to get.

Ivy was born in 2017 with no bottom and no tailbone and was diagnosed with lipomyelomeningocele - a type of spina bifida where the spinal nerves are contained within an external fatty mass, as her mum Colleen Parker, 27, explains.

This means her spinal cord is tethered and can’t move freely, causing her severe leg and back pain and nerve damage. Ivy, who turns 5 in December, also lives with bowel, kidney and bladder issues, requiring constant care and further surgeries.

Parker says she and her husband Simon, 37, who live in Masterton, pushed “for years” to get Ivy another MRI to see whether her condition had progressed.

While they waited, something unexpected happened - when Ivy was about two and a half years old, she just “got up and walked”.

“It was the weirdest, most amazing thing,” her mum recalls.

 “She just pulled herself up by the couch and walked across our lounge to the TV unit and was like, ‘mum, I did it’. And we were like ‘yes, you did!’ but I just about fainted.”

At first, Ivy walked “like a little old lady”, but she worked at it until she got better.

“She just wanted to do things. And that’s just Ivy. If there’s something that she can’t quite do, she will figure out a way around it or she will practice it until she can.”

Since then Ivy’s mastered jumping and doing flips on the trampoline, riding a bike, and climbing trees.

“She’s just this little spider monkey and you cannot stop her. You would not know externally that there is anything different about her,” Parker says.

But an MRI when Ivy was 3 showed that her spinal condition had progressed and she needed a laminectomy, an operation that would involve “basically opening everything up and detaching the spinal cord,” Parker explains.

“It’s like a mad episode of Grey’s Anatomy.”

The procedure was beyond the neurological team at Wellington Hospital, so it was up to Auckland surgeons. But Parker says the lack of communication between Wellington and Auckland led to “dysfunction” when it came to getting a surgery date and they were faced with repeated cancellations.

“It was just this constant anxiety,” she recalls.

Little Ivy has become very active and loves being outside, her mum Colleen Parker says. Photo / Supplied

They finally got an operation date in May this year - then the whole family tested positive for Covid the day before, which was “devastating”.

Parker had to fight to get another MRI for Ivy to see where things were at, finally resulting in an appointment two weeks ago.

On Tuesday, October 8, she got a call from the Auckland surgeon, who had seen Ivy’s MRI results and said things had gotten “really serious”.

“It was just so unexpected,” she says. “We knew that the tethering issues were progressing, but it’s moved significantly up her spine.”

Parker explains that the spinal cord is under tension, causing further damage, and fluid has extended all the way up to Ivy’s neck.

“So it’s gone all the way, it’s in the cervical vertebrae. We thought we were going to be down in the lumbar [lower back] vertebrae. And he said we need to do this now. He didn’t want to wait.”

The operation is even riskier now because of the nerves involved. Previously, if anything went wrong, it could affect Ivy from the waist down. Now she risks losing movement in her arms.

“It’s hard because technically she could come out of this fine. That’s the vibe we’re claiming, that she will just be fine, but there’s also a possibility that we will be sacrificing some of her current motor function, like in her legs, either permanently or for a long time,” Parker says.

However, if they don’t do the surgery, then “everything will eventually go”, she adds.

“It will continue to cause latent damage until she loses sensation and obviously she would die after a while if not for medical intervention.”

Coincidentally, Ivy was meant to undergo major bowel surgery on October 9 to get an appendicostomy – which as she’s incontinent due to spina bifida, would have been life-changing. She’s currently catheterised every four hours.

“It would have been a big thing for her continence-wise, going to school and such, because she’s still in nappies and obviously it’s really distressing for her.”

But now the family is dropping everything and flying to Auckland on November 14, with Ivy’s operation due on the 15th.

“We all have to be there for this. This is not one I feel like I can stay home for.”

A GiveALittle page was set up this week to raise funds for their flights and expenses. To the family’s gratitude, the DHB have now agreed to fund their flights.

Ivy is scheduled for a laminectomy on her spine on November 15. Photo / Supplied

But as Parker notes, there are countless other costs that come with travelling with a family of five - she’s also mum to Raijin, 3, and Magnolia, 11 months. And while acknowledging that Starship’s Ronald McDonald House is “amazing”, she doesn’t expect them to provide everything the family needs.

“There could be things that Ivy needs post op. We just don’t know. She could just be out of action for a couple of weeks and then be perfectly fine, but she also may not be, and so we need to be prepared.”

Parker says she’s passed down her love of medical sciences to Ivy, who stays up at night reading anatomy books when she’s meant to be asleep - so the four-year-old knows what’s going to happen during her surgery.

“She’s got one book that she’s always reading at night, she turns the lamp on when she’s not supposed to and she looks at pictures of the spine, with the nerves and everything branching out, to understand what’s going on.

“So she knows what they’re going to unstick her spinal cord, but she doesn’t know that anything could change.”

But Parker doesn’t want Ivy to worry about the worst-case scenario.

“It’s something I think that we’ll just cross when we come to it, if we do. That’s why this is so traumatic, because this is literally our worst nightmare. This is something that we feared with all the delays going on with the MRIs,” she shares.

“If she loses the function in her legs because of them not doing this, you know … as parents you’re just like, how did this happen?”

Parker and her husband have been left feeling “just a bit angry” at the health system.

She shared that many families - and doctors - are also suffering, which she believes is a due to a faulty system and understaffing that has led to poor communication and leaving people to fall through the cracks.

”They’re failing. It’s failed the doctors, it’s failed everybody in it. There are these special hoops you must jump through, special boxes you must fit in, if you don’t you just get lost.”

Ivy’s parents hope others will resonate with their experience.

“I know that there will be other families that are going through it and hope they won’t feel as alone.”