Cere­bral Palsy

Your Baby & Toddler - - CONTENTS -

Cere­bral palsy is the big­gest cause of child­hood dis­abil­ity in South Africa. Mar­got Ber­tels­mann meets two af­fected fam­i­lies, as well as the or­gan­i­sa­tion that’s bring­ing care ser­vices into our com­mu­ni­ties

TUMELO “TUMI” MATLOU, 31, has three chil­dren: Koketso (13), Kgo­motso (9), and Tsepiso, her boy, is eight. She lives in Davey­ton with her hus­band, Godfrey. But her life is not or­di­nary: Kgo­motso has cere­bral palsy and needs full-time care.

TUMI’S STORY

“I had several scans dur­ing my preg­nancy, and no prob­lems were de­tected un­til, at my last check-up, the clinic sis­ter told me that the baby’s heart was not beat­ing well. She then re­ferred me to hos­pi­tal, where they found cere­brospinal fluid (CSF) in­side my baby’s head.” The baby had some­thing called hy­dro­cephalus, or water on the brain. “I wasn’t sure what that was.

I don’t re­mem­ber anyone men­tion­ing cere­bral palsy (CP),” she says. “They gave me the op­tion to have a Cae­sar or to abort my baby. Well, I said I was a giver of life, not a taker,” Tumi re­calls.

Kgo­motso was born in June 2009. Ac­cord­ing to Tumi, she ap­peared to be a nor­mal child who sucked well and showed no sign of spas­tic­ity.

“She did have the big head that in­di­cates there’s water on the brain. And at three weeks, she had an op to in­sert a shunt into her skull to drain the fluid. We kept going back to hos­pi­tal to have it re­paired. As she grew, I no­ticed changes and be­came wor­ried. She got more stiff. She wasn’t sit­ting...”

Tumi says when Kgo­motso had a seizure at age four, she took her to hos­pi­tal, and that’s the first time she heard the term CP. “I was told she had as­pi­ra­tion pneu­mo­nia,” she says. “This can hap­pen when a per­son’s mus­cles are paral­ysed, and the food goes into the air pipe, and into the lungs, in­stead of the stom­ach,” Tumi ex­plains.

Kgo­motso started ther­apy at the Far East Rand Hos­pi­tal.

“I re­mem­ber walk­ing in and see­ing dif­fer­ent types of chil­dren, all dif­fer­ent types of dis­abil­i­ties.

“I was shocked that there were so many peo­ple with dif­fer­ent types of chil­dren, and that’s when I felt an ac­cep­tance: this is how my child is going to be.

“We joined in the ther­a­pies, but Kgo­motso just kept de­vel­op­ing com­pli­ca­tions. But, now it was eas­ier be­cause at least now I could speak to some­one about it.”

Her speech ther­a­pist said feed­ing her orally was a hazard, and in 2015 she was fit­ted with a feed­ing tube.

At this stage, Tumi heard about Mala­mulele On­ward, an or­gan­i­sa­tion work­ing to im­prove the qual­ity of life of chil­dren with CP and their fam­i­lies.

Es­tab­lished in 2006, Mala­mulele On­ward pro­vides re­ha­bil­i­ta­tion ser­vices to chil­dren af­fected by CP in re­mote and ru­ral ar­eas. It also pro­vides train­ing to sup­port care­givers and par­ents.

“I re­mem­ber feel­ing very happy. At Mala­mulele On­ward, I’m get­ting the right tools to take care of my child.

“I learnt that there is no spe­cific ‘ther­apy time’ in our lives. CP is a way of life. We don’t call our ex­er­cises ‘ex­er­cises’. It’s about con­stantly po­si­tion­ing and sup­port­ing your child, mak­ing sure they are well sup­ported when ly­ing down or sit­ting or stand­ing. CP will al­ways be there.

“But we can make our chil­dren’s lives bet­ter with our knowl­edge.”

Fol­low­ing three weeks of train­ing at Mala­mulele On­ward, Tumi is now a trainer and qual­i­fied peer sup­porter, a parent-to-parent care­giver work­ing in the hos­pi­tal en­vi­ron­ment.

Mala­mulele On­ward has 21 peer sup­port­ers work­ing in 15 hos­pi­tals.

Tumi reg­u­larly vis­its and shares her knowl­edge with other fam­i­lies af­fected by CP. She’s also spon­sored to work at Tambo Me­mo­rial Hos­pi­tal in Boks­burg once a week.

She says Mala­mulele On­ward is aware that it’s much eas­ier for a parent to hear in­for­ma­tion about their child from some­one who knows what’s it’s like from per­sonal ex­pe­ri­ence.

“Some­times the ther­a­pists don’t have chil­dren or don’t un­der­stand CP as well as a committed parent or care­giver does. So let us teach one another,” she adds.

Ruth Mashe, who’s orig­i­nally from Zim­babwe but now lives in Joburg, is one of the moth­ers who ben­e­fit­ted from Tumi’s shared-on knowl­edge.

Ruth is a mother to seven-year-old Ta­tenda, the sur­viv­ing twin in an undiagnose­d twin preg­nancy. Ruth sur­vived a har­row­ing first year with her baby, who cried nonstop. She even con­tem­plated sui­cide.

“I was help­less, I had no sup­port, and I was not work­ing,” she re­calls.

Only when Ta­tenda was about a year old was he di­ag­nosed with CP at Char­lotte Max­eke Hos­pi­tal.

“I met an amaz­ing ther­a­pist, who ex­plained ev­ery­thing to me.

“I started at­tend­ing Mana­mulele On­ward in 2014. Since I was un­em­ployed, I would get called to bring Ta­tenda when­ever ther­a­pists had course train­ing in order to prac­tise their skills on him. I learnt too. I did carer-to-carer train­ing to teach oth­ers how to look after peo­ple with CP.

“I don’t have a spon­sor yet, but I go to Char­lotte Max­eke to help teach other par­ents when­ever I can,” the de­voted mom ex­plains.

“I went on to com­plete Mana­mulele On­ward’s ap­pro­pri­ate pa­per tech­nol­ogy course. I have made a chair – out of card­board! – that Ta­tenda uses.” (See pic­ture of the chair on this page.)

MALA­MULELE ON­WARD

Dr Gil­lian Saloo­jee is a phys­io­ther­a­pist who spent years work­ing in the gov­ern­ment health­care sec­tor be­fore her PhD led her to the Mala­mulele Hos­pi­tal in Lim­popo, where she and a team of ther­a­pists spent five eye-open­ing days pro­vid­ing train­ing and ther­apy to brain­dam­aged chil­dren and their care­givers. The knock-on im­pact of just a small in­vest­ment from ther­a­pists was in­spir­ing to Gil­lian.

“We have wit­nessed the dev­as­tat­ing con­se­quences ex­pe­ri­enced by chil­dren and fam­i­lies with lit­tle or no ac­cess to ther­apy and sup­port­ive equip­ment.

We’ve also seen what can be achieved by chil­dren with CP, and by their par­ents, given the right con­di­tions,” Gil­lian says.

She says with few sources of sup­port, par­ents and care­givers of chil­dren with CP in ru­ral ar­eas are of­ten iso­lated and don’t know about sim­ple in­ter­ven­tions that can make a mean­ing­ful dif­fer­ence to their lives and that of their chil­dren. Most ru­ral ther­a­pists also lack ap­pro­pri­ate train­ing and ex­pe­ri­ence in work­ing with chil­dren with CP.

“Par­ents need to know two im­por­tant things; one: it’s not my fault my baby has CP, and two: there are oth­ers like me,” says Gil­lian.

She adds that she would like to see an of­fi­cial, gov­ern­ment-reg­u­lated qual­i­fi­ca­tion, with ap­pro­pri­ate train­ing and ac­cred­i­ta­tion, be­ing cre­ated, so that care­givers work­ing with chil­dren with dis­abil­i­ties, such as CP, can de­velop ca­reer paths and have bet­ter em­ploy­ment op­por­tu­ni­ties.

Tumi and Kgo­motso Matlou (left), Ruth and Ta­tenda Mashe (be­low) and Zingce Zi­bonele (opposite page) have all ben­e­fit­ted from Mala­mulele On­ward’s cere­bral palsy sup­port.

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