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Down Syndrome

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability. 

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential. 

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context. 

 

Empowering programme 

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.  

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says. 

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains. 

 

Feedback from parents 

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do …  she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.   

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before …  as a mother of a Down syndrome baby – but for any mother …  I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot …  my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …” 

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.  

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq. 

News Archive

Prof. Letticia Moja a winner in her category
2004-08-17

 

Prof. Moja a finalist in award 
'Every member of staff is important to me'

Michelle Cahill - Bloemnuus

IF you are in need of a dose of inspiration, try and get an appointment with Prof. Letticia Moja, the Dean of the Faculty of Health Science at the University of the Free State. It will not be easy as she has an extremely tight schedule, over and above being a finalist in the 2004 Shoprite/Checkers Woman of the Year competition.

 

Although not a born and bred Free Stater, this dynamic woman has come to love the Free State. "Once you get past the mindset of a small town and all the negatives surrounding it, it is an absolutely wonderful experience," Moja said.

Moja was born in Pretoria and grew up in Garankuwa as the second eldest of five children. "That was nothing special. I was not the eldest and I wasn't the youngest," she quipped. She had two younger brothers, one of whom died in a car accident and then two sisters.

She went to school in Pretoria and her first contact with the Free State was when she wrote her matric at Moroka High School in Thaba Nchu. "That was one of the best schools for us at that time," she says. After completing matric, she went on to study medicine in KwaZulu-Natal.

In 1982 she returned "home" and completed her internship at the Garankuwa Hospital. Hereafter she specialised in gynaecological obstetrics at Medunsa.

She became the head of the gynaecological obstetrics unit and later opened a branch in Pietersburg.

"This was just about the most heart-rending time of my life. You saw people travelling for up to three days just to see a doctor," she says. "Here we really interacted with the community."

In 2001 she was invited by the University of the Free State to apply for the job of vice-dean of the Faculty of Health Science. "I wasn't too keen," she says, "but they kept on calling to find out if I had applied or not," she says with a smile. "Eventually I gave in and was appointed."

She thought she would work a couple of years under Prof. Kerneels Nel, then the dean of the faculty. "Unfortunately that was not to be. I had hoped that I could learn from him," Moja says.

Prof. Nel died of a heart attack in 2003 after which Moja deputised for him before being appointed as dean.

"This brought along a whole newset of challenges," she says, "Now I have to work out budgets and I need to know what human resources are," she jokes. This has prompted her to take up her studies again and she is currently doing her MBA.

"It has certainly been a challenge to go into management and without my support structure I most certainly wouldn't have been able to do it," Moja says.

Moja is actively involved in her church and serves on various committees including the Health Professional Council where she is acting president of the Medical and Dental Board and the Provincial Aids Council.

To her no job is menial. She recalls when she used to have "high tea" with her staff in Gauteng and Limpopo. "One of the cleaning ladies used to think her job was menial. That is just not so. No hospital can do without even the lowest position. Imagine stepping over rubbish while you're trying to catch a baby. To me everybody is important no matter what you do. "

Moja's eldest daughter is studying for her B.Accounting degree at Wits . Her youngest daughter is in Gr. 9 at Eunice and she has also brought along her niece, who is in Gr. 8 at Eunice. "You see, we need to be three girls in the house."
She feels honoured to have been nominated by the institution especially as it is traditionally male-dominated. "It is not about me, but about the support structure. Nobody can do it on their own. It is a team effort."
BLOEMNUUS - VRYDAG 9 JULIE 2004

 

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