When Portia’s three-year-old granddaughter was still struggling to walk, couldn’t grip anything and was hardly talking, she feared the rumours circulating in their village in Zimbabwe. Portia blamed herself and her daughter, Rumbidzai, for the child’s difficulties.
“Our reaction was that the child was bewitched,” Portia explains. “We should have been careful. No one should have known about Rumbidzai’s pregnancy until it was difficult to hide it. That was the tradition.”
Rumbidzai was 16 when she went into labour. She had to half-waddle, half-run with a bundle on her head and a carrier bag in her hand to catch a minibus taxi to the nearest clinic, Portia recalls. It was a gruelling, bumpy trip along dirt roads to Sowa in the Uzumba-Maramba-Pfungwe district in Mashonaland East that took nearly two hours.
“After 13 hours of labour Rumbidzai delivered a baby girl,” says Portia.
Superstition and myths abound
Portia was relieved that her daughter and granddaughter had survived the difficult birth. But as the months passed, she noticed the baby was not sitting. Or crawling.
When the little girl was three, the two women took her to a traditional healer. “The child was indeed bewitched, he told us.” Portia shivers as she remembers his words. “He told us to leave the village. We moved to the city.”
A year after the family arrived in Harare, a neighbour referred them to the Harare Central Hospital. There the child was seen by Greg Powell, a paediatrician who founded the Children’s Rehabilitation Unit at the hospital in 1986. Powell diagnosed her with cerebral palsy, telling Rumbidzai and Portia that her muscle tone and movement were affected.
Cerebral palsy is a disorder that impairs a person’s ability to move and maintain balance and posture, according to the United States Centres for Disease Control. It may also cause intellectual impairment.
Powell assured the two women that the child was not bewitched. He explained that her condition was the result of a lack of oxygen during birth. This might have been prevented if Rumbidzai had received antenatal care and had been able to reach a health facility soon after going into labour.
Children may be casualties of crumbling economy
The brain damage that leads to cerebral palsy can happen before or during birth or may be the result of severe jaundice during the postnatal period.
The Situation Analysis of Children and Women in Zimbabwe Update (2011-2014) estimates there are 600 000 children with disabilities in Zimbabwe. Although there is no recent data on the incidence of cerebral palsy in the country, Powell says it is the most common form of severe disability in the country.
The Children’s Rehabilitation Unit has recorded a threefold increase in the number of cases of cerebral palsy in recent years. Powell ascribes this to the deterioration of Zimbabwe’s health services, reflecting the country’s dramatic economic decline.
“Underresourced and understaffed hospitals are struggling to maintain obstetric and neonatal services,” he says. This means mothers have delayed access to caesarean sections and other forms of emergency obstetric and postnatal care.
“Most complications that cause cerebral palsy in children are preventable if they are diagnosed and treated early,” Powell explains. This applies particularly to cerebral palsy caused by birth asphyxia and neonatal jaundice.
Even when they notice their babies are not meeting developmental milestones, many Zimbabweans can’t afford to seek medical help.
But the Children’s Rehabilitation Unit provides free diagnostic and treatment services for children with disabilities or developmental delays. Powell describes it as a good example of a partnership between a non-governmental organisation and the government. The JF Kapnek Trust, a charitable organisation, supports the activities of the unit, and the ministry of health and childcare provides the doctors, therapists and facilities.
“Because many people in Zimbabwe still believe disability is a punishment from God or caused by witchcraft, the unit follows a ‘demedicalised’, holistic approach to the problem of childhood disability,” he explains. Counselling and educating parents on the causes of disability and forming parent support groups are as important as traditional rehabilitation therapy, he adds.
Taking care of children and their families
In the physiotherapy department, occupational therapist Sandra Kasu gently takes a crying baby from her mother and strokes her back until the sobs die down. Maureen Zimunda brings her 13-month-old daughter, Kelly, to the unit twice a month. Zimunda lives in Hopley, a sprawling slum on the outskirts of Harare. When Kelly was six months old, she still felt very “floppy” and was unable to hold her head up. She couldn’t roll over.
“Because of my child’s condition I couldn’t leave my home,” Zimunda says. An aid worker who visited the area sent Zimunda to the Child Rehabilitation Unit. With every visit she closely watches Kasu, the head of physiotherapy, so that she can repeat the treatment at home.
Kasu kneels with Kelly, patiently taking her through the motions of sitting, crawling, semi-kneeling and putting her in the standing position. Using a cerebral palsy ball and a tilt board, she helps Kelly develop her balance and corrective reactions.
Kasu explains that these exercises help normal movement and posture in children with nervous developmental problems. The movements are performed to avoid muscles becoming too floppy or too tight and to improve their posture and motor skills.
“Often parents come [here] expecting medicines and injections. When we tell them we’ll try the exercises, they shrug. But we always counsel them,” she says. “Whatever motions we do with the children, we also teach the parents to do it at home.”
The therapists at the unit treat on average 25 children a day, most of them with cerebral palsy conditions, and the doctors see about 30 children each day.
“The situation is different with our outreach programmes. The figures shoot up to 700 children. The reason for the big numbers is that it is easier for parents to come to the field centres as they are closer to their communities,” Kasu explains.
Every afternoon a team of therapists travels to one of Harare’s 13 high-density suburbs, providing group services twice a month to most suburbs. It brings the mothers of disabled children in these areas together and they form support networks.
Although the programme is relatively inexpensive to run, Powell says it has been a battle to find donor organisations willing to support rehabilitation services for children with disabilities.
“The implosion of the Zimbabwean economy over the last decade created several challenges,” says Powell. “The remuneration of professional staff has declined to barely subsistence levels and this adversely affects morale. It has become increasingly difficult to maintain outreach activities. It is only because of the dedication of the long- serving staff members that services continue to be provided.”
Rumbidzai’s child is now seven years old. She regularly sees the speech therapists at the unit and is beginning to speak. She is also walking on her own.
Rumbidzai knows her daughter will always have difficulties. There is no cure. But she also knows her daughter can become independent. “She can even hold a cup of tea and drink by herself,” she says quietly. Proudly.