Special Needs Levi is a beacon of hope despite being born with spina bifida
Quinnica and Llewellyn Janse van Vuuren welcomed their rainbow baby – a baby born after pregnancy loss – into their family. Little Levi has brought them hope and joy, and introduced them to spina bifida, writes Carin Bevan
WHEN QUINNICA JANSE van Vuuren (25) from Gonubie in East London fell pregnant after two miscarriages, her new baby was supposed to be her rainbow child: a sign of hope after tragedy. But then a routine scan showed signs of spina bifida. The storm, it seemed, was far from over.
A foetal specialist in Port Elizabeth confirmed their fears: their baby had myelomeningocele, the most severe form of spina bifida. “He blatantly told us that we should abort; that our child would be completely useless,” says Llewellyn (29).
Their own gynaecologist was far more sympathetic. “He cried with us,” recounts Quinnica, ”and reminded us that it was our decision to make. The real question, he said, was whether or not we felt prepared to tackle this challenge”.
One day, Quinnica and Llewellyn went for a drive to Noordhoek in Port Elizabeth. “There’s this beautiful place where you sit on a hill and look out over the sea. We just sat there, praying. And that’s when we decided to keep him,” says Llewellyn.
While talking about their heartache and the faith that helped them through this time, Levi babbles and chats away – far louder than any of us adults.
At one year old, he has already disproved so many of the specialist’s predictions: he’s healthy, growing well, is saying his first words and is even close to crawling. And unlike many other children with myelomeningocele, Levi’s kidneys are healthy and he doesn’t need a catheter.
But getting Levi to this point has taken a lot of interventions and hard work. FIGHTING FOR LEVI Eight hours after he was born, Levi received surgery to close the opening in his back. Within a month he had two more operations: one to remove an infection and another to fit the shunt that drains excess fluid from his brain.
During this time, Levi had to be watched very closely for more signs of infection, as bacteria this close to his nervous system could lead to lifethreatening illnesses such as meningitis.
Now, the biggest challenge is to keep his bladder and kidneys healthy. Quinnica and Llewellyn have a special trick to make sure he empties his bladder properly every time he urinates – if he doesn’t, it can lead to infections and long-term kidney damage.
People with spina bifida are also at risk of developing a latex allergy, possibly because they are exposed to so much latex at a very young age. (The material is found in a lot of medical equipment, including surgical gloves.) The Janse van Vuurens are doing all they can to prevent further exposure – which means avoiding anything that contains rubber
and latex: from balloons, sticky plasters and elastic bands to related foods such as bananas, tomatoes, avo and kiwi.
They’ve also had their fair share of fights with the medical aid. Fortunately, their fund has now agreed to pay for two physio sessions per month from the prescribed minimum benefits.
For the most part, however, Quinnica and Llewellyn see Levi as just a normal little boy who loves to play, laugh and pull his six-year-old brother’s hair. “He’s crazy about his brother!” says Quinnica. “When he hears Zaydon’s voice, he’ll wake up immediately.” Zaydon is also very protective over his baby brother: “He won’t let people come anywhere near him unless they’ve washed their hands.”
TIE A YELLOW RIBBON
While Levi is doing remarkably well, the majority of South Africans with spina bifida don’t have it easy. “South Africa doesn’t have enough spina bifida research, experts or equipment,” says Quinnica. “If we want to solve this, we have to raise more awareness about spina bifida.”
And so, while he may be a rainbow baby, it’s yellow that has most come to represent Levi. It’s the colour of spina bifida awareness, and on International Spina Bifida Day, their church wraps a tree in yellow in his honour. It is also the colour of sunshine, hope and the joy the Janse van Vuurens share with their two young sons. YB
The Janse van Vuurens in March 2017. Photo: Cheryldene Myburgh
Zaydon meets his little brother for the first time. “Zaydon’s tears were very close to the surface,” says Quinnica
Levi Janse van Vuuren in March 2017. Photo: Cheryldene Myburgh
Above: Celebrating Levi’s first birthday with a rainbow-themed party. Below: Levi’s first birthday cake shows the spina bifida surgery scars on his back. Quinnica calls it his “angel wings heart”. Photo: Jeannette Rossouw
25 OCTOBER IS INTERNATIONAL WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY