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

Your Baby & Toddler - - Contents -

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

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