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Meet Flynn

24th October, 2019

Recovery of Lara youngster Flynn Evans testament to work of doctors at Royal Children’s Hospital

When Flynn Evans was born, doctors could not guarantee to his parents, Maddie and Mark, that he would ever walk on his own.

A spina bifida diagnosis mere hours after the little boy’s birth thrust the Lara family into unknown territory.

Two years on, Flynn tears past his parents and older half-brother Riley, on their way to the park.

Watching the vibrant, happy two-year-old running to his heart’s content, you wouldn’t know he had major spinal surgery in the first 24 hours of his life.

Flynn’s health is a testament to his treatment at the Royal Children’s Hospital, which is ramping up for its annual Good Friday Appeal this week.

The Evans family feel indebted to the hospital for giving their little one his quality of life, and want to advocate for the hospital which did so much for their son.

Maddie remembers Flynn’s birth, her first child, and her husband Mark’s second, vividly.

“I had a perfect pregnancy. We had the perfect birth in Geelong,” she says.

However, as soon as Flynn was born, there was evidently something wrong. There was a big red bump protruding from the newborn’s lower back.

“We went straight by ambulance to The Royal Children’s Hospital,” Maddie says.

Doctors at the Melbourne hospital confirmed what the team at Geelong had guessed, Flynn had myelomeningocele spina bifida.

Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord.

Myelomeningocele is the most common and serious form, in which the abnormal spinal cord is exposed on the surface of the back.

Flynn learning to walk with walking frame

When learning to walk, Flynn Evans, who has spina bifida, needed a walking frame. Pictured here with his brother Riley

Flynn, mere hours old, underwent a six-hour spinal operation to repair the hole in his back and place his spinal cord back inside his body at the Melbourne hospital.

“It was so overwhelming, there was so much going on,” Mark says.

“We didn’t know anything about spina bifida, we had no idea,” Maddie adds.

“The neurosurgeons put the spinal cord into a man-made sheath, then he was handed to plastic surgery and they sewed the muscles and the flesh back together again.

“His first surgery felt like it went forever – by the time he came out of surgery he was just a day old.”

One week later, Flynn was diagnosed with a Chiari malformation and was showing signs of hydrocephalus, a condition which causes increased pressure inside the skull due to cerebrospinal fluid.

“His head was swelling with spinal fluid,” Maddie explains.

So at one week old, Flynn went into surgery again to place a cerebral shunt into his skull to drain fluid from his brain to his stomach.

One week after the shunt it was evident Flynn had a neurogenic bladder disorder. He will need the assistance of catheters for the rest of his life.

Maddie stayed in Melbourne the entire time Flynn was in hospital. She spent one week in the new mothers’ unit, followed by six weeks at Ronald McDonald House.

“We’re so blessed to have the Ronald McDonald House, I don’t know what I would’ve done otherwise,” she says.

After seven weeks at the Royal Children’s Hospital, Maddie and Flynn Evans were able to come home to Lara.

After two weeks at home, the family returned to the hospital because one of Flynn’s wounds was infected, but he also recovered from this setback.

Flynn at The Royal Children's Hospital

Flynn at The Royal Children’s Hospital

Milestones are not taken for granted in the Evans household.

Flynn turned two in March, happy and healthy.

“He started walking at Christmas,” Maddie says, glowing with pride. “Considering they didn’t know if he was going to walk at all, it’s amazing.”

Flynn’s prognosis is somewhat unknown. Some children with spina bifida need wheelchairs, due to weakness in their lower body.

“As he grows the spinal cord can get stuck,” Maddie says. “The doctors explained his legs can become weak.”

But Flynn’s attitude is inspiring.

“He’s just the happiest kid, nothing fazes him,” Mark says, as he watches Flynn chase Riley around the park.

“He woke up from brain surgery and he was smiling.”

“He’s always been a fighter, so strong and determined,” Maddie adds.

“He sees no obstacles, even from day one.”

The next thing for the family to look forward to is a new addition to the family, as Maddie is due to have a baby in July.

The decision to have another child was not taken lightly.

“It was very hard. When we got married we planned to have a couple of children. Our family wasn’t complete,” Maddie says.

There was no family history of spina bifida and the Evans’ unborn baby’s tests have shown this child is free from any signs of the condition.

Flynn still receives monthly physiotherapy and chiropractic in Geelong.

The Evans family

The Evans family, Riley, 14, Mark, Flynn, 2, Maddie

He visits the Royal Children’s Hospital every six months to see his specialists; his neurosurgeon, urologist, plastic surgeon, neural tube defect doctor and additional physiotherapist.

The Royal Children’s Hospital complex care team ensures these visits are booked in a way that minimises the Evans’ trips to Melbourne, to relieve stress on the family.

Flynn will continue to have access to the hospital until he is 18.

Maddie and Mark will never forget the incredible and caring experience they had at the Royal Children’s.

The relationships they made, not only with the staff, but other families, are for life.

“Spending all that time in the hospital, you meet a lot of people dealing with similar feelings, with kids in there that are very unwell,” Mark says.

“As much as you don’t want to be there, it’s nice to be there if you have to be there. The doctors, they are the top in their field, they gave us confidence.

“And we were very much looked after as well. Now we fully understand why people give so much money (to the appeal).”

“We will never be able to thank the doctors for what they’ve done for Flynn. We just owe them so much.” Maddie says.

Originally published in the Geelong Advertiser, April 15, 2019

Words: Stephanie Azzopardi

Images: Peter Ristevski and supplied

To read the original story, visit the Geelong Advertiser website.

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