THERAPY TO THRIVE:
A group of therapists step in to help babies with delayed development in their crucial first 1 000 days
Zaitoon van Rooyen (2) walks confidently into Bhabhisana’s therapy room in Athlone, Cape Town, for a follow-up session, her left hand balled closed.
‘She was our screamer; she would never co-operate with us,’ says speech therapist Faizah Toefy Parker with a fond smile. It’s an unfussy, welcoming space, and your first instinct is to kick off your shoes and pad about in your socks, much like Faizah and physiotherapist Ann Bullen are doing.
A blue rubber mat takes up most of the floor space. There are upcycled sensory toys and a poster charting the milestones that babies need to meet in their first two years. Ann sets up colourful therapy blocks on the mat for Zaitoon to crawl up and over.
‘See, I want weight bearing on that left hand,’ she says to mom Zola as the little girl scrambles over to rapturous applause. ‘Weight bearing prepares the hand for opening.’ When Zaitoon picks up a book, Faizah steps in, encouraging her to turn the pages from right to left and activating her vocabulary while Ann gets her into a standing position.
‘Birdie! Kitty!’ Zaitoon parrots. ‘I’m so impressed with her hand,’ says Ann. ‘I’m so impressed with her words!’ says Faizah. This is a child who was given a 10% chance of survival at birth.
The developmental progress that Zaitoon has made is nothing short of a miracle if you were to crunch the numbers: she was born prematurely at 27 weeks with brain damage on the left side, weighing 565 grams. The doctors didn’t think she’d make it. But by day 39 she was fighting, though still on oxygen. She spent 120 days in the neonatal unit and was discharged weighing only 1,7kg.
‘Her left side was totally weak,’ says Zola. ‘She couldn’t use her arm; she couldn’t move her leg… To be honest, I came to Bhabhisana with little hope, but as you can see, she’s up and running.’
Zaitoon and other kids like her are at the mercy of overstretched state-run institutions and often have to wait months for their first therapy appointment. Bhabhisana (which loosely translates as ‘make one another fly’ in Xhosa) provides multidisciplinary therapy to those who can’t afford private therapy by supporting the babies and their families until they’ve been fully integrated into the public health system. It also provides support at high-risk clinics.
‘We didn’t have the money to start the project,’ says Faizah. ‘But we had the expertise. So instead of doing nothing, we thought, “Let’s just do this thing!”’ The four highly specialised founding members – Ann, Faizah, physiotherapist Esther Geretto and occupational therapist (OT) Debbie Mobbs – help high-risk babies meet their milestones by developing their gross and fine motor skills, communication and language skills, and self-help and social skills.
Early intervention is their primary concern, particularly during the first 1 000 days of a child’s life, from conception to age two.
‘More and more research is indicating that those 1 000 days are crucial in terms of the plasticity of the brain and how you can still effect change to actual brain development,’ explains Faizah. ‘That early intervention time is often missed because doctors are still deciding what the problem is and whom to refer the babies to,’ says Ann. And even when babies are referred to therapists in the state system, they may have to wait up to three months for a physio appointment and even longer for occupational therapy or speech therapy. In the
The developmental progress that Zaitoon has made is nothing short of a miracle: she was born prematurely at 27 weeks with brain damage on the left side, weighing 565 grams. The doctors didn’t think she’d make it.
meantime, vital intervention time is being lost.
‘We’re saying it doesn’t matter what the diagnosis is,’ says Ann. ‘Let’s support this family because they’ve realised their baby is different, so let’s work where the child is and facilitate development.’
This is where the project is meeting a dire need: the therapists treat babies during that three-to-six-month wait. And even when the children eventually get a therapy appointment, the women at Bhabhisana are hesitant to let them go.
‘There isn’t always a multidisciplinary team where they’re going,’ says Faizah. ‘When Zaitoon chose the book my instinct was to let her sit, but Ann wanted her to stand because she wanted her foot flat. So she was aiming for her functional goal but using my reading opportunity to get that stimulation – that interdisciplinary work makes all the difference.’
Also, families are confronted with a crowded local clinic where they wait hours to see one therapist who not only has a queue out the door but who might well be inexperienced.
The Bhabhisana therapists take a more holistic approach by offering more than just their expertise: they’ve created a therapeutic environment for parents too, many of whom have been through a traumatic birth.
‘They’re still dealing emotionally with that,’ says Faizah. ‘Then they come here after their child has just got a severe diagnosis… So sometimes we don’t do much therapy because all the parents need at that point is emotional support.’ By supporting the family as a whole, parents are empowered to be part of their baby’s development, which helps them to better interact and bond with their child, all of which promotes development. Zaitoon, for example, used to shriek, and to achieve any headway, the therapists first had to teach her parents to stay calm and not give in to her.
Kids get a 45-minute session once a month at Bhabhisana, yet while they’re given comprehensive, focused therapy, it’s not enough to ensure steady progress. Day-to-day management makes the difference.
‘We train parents to incorporate therapy into everyday activities,’ says Ann. ‘If, for instance, the child sits in a supported way in a cardboard box, Mom can carry on cooking, but the position makes the child work – to keep their balance; it makes their abs work…’ adds Faizah. ‘Or during bath time, we show parents how to stimulate the use of language (“now you’re washing your hands”). So you’re not creating 10 exercises – you’re using feeding time or dressing time to do all those things.’ Functional play is also vital.
Each family is given an A5 notebook with instructions in the form of simple illustrations and explanations. ‘Lots of talking while in the nesting position, with lots of eye contact’, reads one entry by the OT; ‘No walking ring!’ writes a physio. These home programmes are what the families need to follow between therapy sessions.
‘Parents often say, “Look what wonderful work you’ve done in a month!”’ says Faizah. ‘But the 45 minutes we spend with their child isn’t what made the difference – they made the magic happen when they did it every day.’
For all their good work, the therapists are battling to keep the project going: in fact, they were on tenterhooks as to whether they would be able to operate this year at all.
‘Thankfully, the DG Murray Trust funded us for a second year, and that is affirmation that this project is worth funding,’ says Ann. ‘There’s a huge need out there, but we can’t help everyone because we have to work elsewhere to earn money,’ says Faizah. ‘We often wonder what we’re going to do. But when you see the change, you think: how can you walk away from something that is having such an impact?’
Zaitoon now goes to the cerebral palsy clinic at Red Cross Children’s Hospital, but the Bhabhisana therapists will keep an eye on her until they’re sure she has been fully integrated into the system.
‘We couldn’t have done it on our own,’ mom Zola says. ‘Bhabhisana walked with us every step of the way.’
Therapists Faizah Toefy Parker (far left) andAnn Bullen (third from left) treating little Zaitoon van Rooyen. Sessions always involve both parents, mom Zola van Rooyen and dad Azizul Haq Mamun.
Working on hand and breath control using play.