Spe­cial Needs The Enslin fam­ily are rolling with the punches

Squar­ing off with a va­ri­ety of spe­cial needs has be­come an in­te­gral part of the Enslin fam­ily’s lives. They share their story with Carin Be­van

Your Baby & Toddler - - Con­tents -

FOR JO­HANN AND Maryke Enslin from Cape Town, par­ent­hood has been a lot like a boxing match. “Just as you get up from one blow,” Maryke ex­plains, “an­other one comes and knocks you down!”

Be­fore 2013, life with their first­born, Alexi, had been pretty easy. “Our big­gest stress was which pram to buy,” laughs Maryke. Then, a few months af­ter the birth of their sec­ond child, the first blow hit them.

ROUND ONE: HEAR­ING LOSS Gia was di­ag­nosed with 85% bi­lat­eral sen­sory hear­ing loss – mean­ing she only had 15% hear­ing in both ears. “At the time it felt like my world had col­lapsed,” says Maryke.

But they soon got used to hav­ing a child with spe­cial needs. Gia got some top-of-the-range hear­ing aids, started speech and oc­cu­pa­tional ther­apy, and the fam­ily found a fan­tas­tic sup­port net­work at the Carel du Toit Cen­tre for Hear­ing Im­paired Chil­dren in Tyger­berg.

“In ret­ro­spect, find­ing out that Gia was deaf was noth­ing,” says Jo­hann. “It was sim­ply pre­par­ing us for what was to come!”

ROUND TWO: A DIS­AS­TROUS PREG­NANCY With Gia just over a year old, Maryke fell preg­nant again. Un­like her first two preg­nan­cies, how­ever, they de­scribe this one as a “dis­as­ter”. She bled on and off for 18 weeks, un­til she was fi­nally rushed to hos­pi­tal at 28 weeks with a pro­lapsed cord (a rare and very se­ri­ous con­di­tion in which the um­bil­i­cal cord pro­trudes from the uterus). “It all hap­pened so quickly,” re­calls Jo­hann. “From in­ject­ing the epidu­ral to Jo coming out took less than one minute!”

De­spite be­ing born so pre­ma­turely, Jo did ex­tremely well. He weighed 1.3kg and had an Ap­gar score of 9. Again, things started to calm down as Jo got even stronger in NICU. But again, the Enslins were in for an­other – much bigger – shock.

ROUND 3: GRADE IV BRAIN BLEED AND CERE­BRAL PALSY One day, still in NICU, Jo’s heart­beat and breath­ing be­came com­pletely er­ratic. A brain scan showed the worst: the en­tire right side of his brain had suf­fered a grade IV bleed. He was rushed to the Chris­ti­aan Barnard Hos­pi­tal with not a minute to spare, re­counts Jo­hann: “The doc­tor said that if Jo didn’t get to a neona­tol­o­gist right away, he wouldn’t sur­vive the night.”

“I’ve never cried like that,” re­mem­bers Maryke. “That’s where our jour­ney started in earnest.”

While the doctors weren’t us­ing the term “cere­bral palsy” just yet, they did ex­plain that Jo’s mo­tor skills would be af­fected. In fact, most of them be­lieved that the lit­tle boy would be se­verely dis­abled. One spe­cial­ist called his brain “Swiss cheese”, be­cause it was so rid­dled with holes. “So my first thought was, what can I use to fill those holes?” says Maryke.

And so, when Jo fi­nally went home af­ter more than 50 days in hos­pi­tal, Maryke started with an in­ten­sive early in­ter­ven­tion pro­gramme. They al­ready had first-hand ex­pe­ri­ence of just how ef­fec­tive this could be, as Gia was now de­vel­op­ing very well de­spite her early set­backs.

Over the fol­low­ing months, Jo started with speech, oc­cu­pa­tional, phys­i­cal and hippo (or horse) ther­apy. Maryke and their Ed­u­care-trained au pair/ fa­cil­i­ta­tor, Ni­cola Moodie, also started in­clud­ing ther­a­peu­tic ac­tiv­i­ties into Jo’s daily rou­tine. “The ther­a­pists show you what to do,” Maryke ex­plains. “Then you go and do the ther­apy at home – on steroids!” The hard work started pay­ing off. De­spite be­ing di­ag­nosed with cere­bral palsy – and de­spite the doctors’ ini­tial pes­simism – Jo was de­vel­op­ing re­ally well.

ROUND 4: EPILEPSY Just be­fore his first birth­day, the usu­ally happy, friendly Jo started dis­en­gag­ing. “He stopped laugh­ing,” says Maryke. “Some­thing wasn’t right.” As it turned out, Jo was ex­pe­ri­enc­ing in­fan­tile spasms: seizures so sub­tle they may look like noth­ing, but can lead to se­ri­ous brain dam­age if not treated early.

Jo was ad­mit­ted to hos­pi­tal once again, where he celebrated his first birth­day with his par­ents, sis­ters and the hos­pi­tal staff.

TWO LIT­TLE CHAM­PI­ONS Jo’s epilepsy wasn’t the last blow, nor was that his last time in hos­pi­tal. (He spent his sec­ond birth­day there too!) But their big fight has done noth­ing to knock the Enslins’ faith in God, or their pos­i­tiv­ity and sense of hu­mour.

Whether they’re re­count­ing how the usu­ally talk­a­tive Maryke was com­pletely dumb­struck by one doc­tor’s in­sen­si­tive com­ment, or telling the story of Jo drag­ging him­self across the floor to steal his sis­ter’s donut, their story is punc­tu­ated by jokes and laugh­ter.

Above all, their chal­lenges have made both Gia and Jo de­ter­mined to suc­ceed. Gia is at­tend­ing a main­stream nurs­ery school and has learnt to speak beau­ti­fully. And Jo is fiercely com­mit­ted to learn to walk and talk. “He’s such an in­spi­ra­tion. He’s go­ing to change peo­ple’s lives!” says his dad. The Enslins say they wouldn’t change any­thing about their chil­dren. “They give mean­ing to life,” the cou­ple says. YB

The Enslin fam­ily: Jo­hann (40) and Maryke (36) with Alexi (6), Gia (4) and Jo (nearly 3). “Alexi is a fan­tas­tic older sis­ter,” says proud dad Jo­hann.

Gia Enslin (4) Jo Enslin (3)

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