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
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