A group of ther­a­pists step in to help ba­bies with de­layed de­vel­op­ment in their cru­cial first 1 000 days

Fairlady - - CONTENTS - By Maya Morgan-Skillen

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.

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