By Meluse Kapatamoyo
The joy of bringing a healthy baby into the world is every mother's wish. When Mbachi Mtonga was ushered into the labour ward at the University Teaching Hospital back in 2000, she could not contain her excitement. The excitement of getting to look and hold her baby overshadowed the labour pains.
What Mbachi didn’t anticipate was just how complicated her labour would be and much worse, how drastic her life would change.
“I had prolonged labour which lasted almost two days. I really thought I was going to die and that my child would die too. The doctors had to use a vacuum to suck out my baby. When she was taken out, she never cried like other children do. They said she had Asphyxia, her brain was starved of oxygen,” explained Mbachi.
Little did Mbachi know that the lack of oxygen to her baby’s brain had caused irreparable brain damage leading to a condition known as Cerebral Palsy (CP). The damage is sometimes caused by injury or abnormal development of the brain that occurs while a child’s brain is still developing. This can happen before, during, or immediately after birth.
Despite the severity of the condition, not many cases are diagnosed at birth like Mbachi’s daughter, Kaseba, now aged 13. CP affects among other things, body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.
“Four months after her birth, we realised that she had no head control. But when we took her to the hospital, we were told to wait until she was six months old. Because she was chubby, doctors thought she was just being lazy. Only later were we informed that she had CP,” said Mbachi, who is also Chairperson of the Zambia Association of Parents for Children with Disabilities (ZAPCD).
Kaseba is now totally dependent on her mother and 9 year old brother, Wongani. She lacks the sense of speech and only communicates by way of mumbling, smiling and crying. Without support she cannot sit on her own as her muscles are stiff and she rarely moves her hands. She therefore does not know how to feed herself nor chew.
“I had prolonged labour which lasted almost two days. I really thought I was going to die and that my child would die too. The doctors had to use a vacuum to suck out my baby. When she was taken out, she never cried like other children do. They said she had Asphyxia, her brain was starved of oxygen,” explained Mbachi.
Little did Mbachi know that the lack of oxygen to her baby’s brain had caused irreparable brain damage leading to a condition known as Cerebral Palsy (CP). The damage is sometimes caused by injury or abnormal development of the brain that occurs while a child’s brain is still developing. This can happen before, during, or immediately after birth.
Despite the severity of the condition, not many cases are diagnosed at birth like Mbachi’s daughter, Kaseba, now aged 13. CP affects among other things, body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.
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| Kaseba relaxing at home in Kafue |
“Four months after her birth, we realised that she had no head control. But when we took her to the hospital, we were told to wait until she was six months old. Because she was chubby, doctors thought she was just being lazy. Only later were we informed that she had CP,” said Mbachi, who is also Chairperson of the Zambia Association of Parents for Children with Disabilities (ZAPCD).
Kaseba is now totally dependent on her mother and 9 year old brother, Wongani. She lacks the sense of speech and only communicates by way of mumbling, smiling and crying. Without support she cannot sit on her own as her muscles are stiff and she rarely moves her hands. She therefore does not know how to feed herself nor chew.
Her menu consists of soft foods which do not require chewing, such as mashed potatoes.
Although life is limited to the bed and sometimes the wheelchair, Kaseba is high-spirited and very much alive to her surroundings as she has a good sense of hearing. She demands attention and expects to be first to be greeted whenever the household
receives visitors.
According to her mother, when First Lady Dr. Christine Kaseba is on TV, you are guaranteed to see a wide smile and hear a lot of mumblings from young Kaseba.
Despite Kaseba’s disabilities, Mbachi strives to make her daughter’s life as normal as possible. Whenever possible, Kaseba accompanies her mother for shopping. She has taken her daughter swimming at Dream Valley, looking at the photos, happy is not the word one would describe to express the expression on the girl’s face.
Zambian-Italian Orthopaedic Hospital Administrator Sister Margaret Mweshi explained that if a mother has had German measles, severe cerebral malaria,
Jondis or Sexually Transmitted Infections (STIs), it is possible for the child to develop CP before birth. In addition, complications arising from HIV can also ultimately affect the growing baby.Although life is limited to the bed and sometimes the wheelchair, Kaseba is high-spirited and very much alive to her surroundings as she has a good sense of hearing. She demands attention and expects to be first to be greeted whenever the household
receives visitors.
According to her mother, when First Lady Dr. Christine Kaseba is on TV, you are guaranteed to see a wide smile and hear a lot of mumblings from young Kaseba.
Despite Kaseba’s disabilities, Mbachi strives to make her daughter’s life as normal as possible. Whenever possible, Kaseba accompanies her mother for shopping. She has taken her daughter swimming at Dream Valley, looking at the photos, happy is not the word one would describe to express the expression on the girl’s face.
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| Kaseba in a pool with her mum and brother |
Zambian-Italian Orthopaedic Hospital Administrator Sister Margaret Mweshi explained that if a mother has had German measles, severe cerebral malaria,
In certain cases if a pregnant woman is involved in an accident, the severe movement that takes place, could damage the unborn child’s brain which is still developing. The severity of the problem is almost always directly connected to the amount of damage.If the damage is extensive then (you expect) the signs and symptoms will be predominant. If the right side of the brain has been damaged extensively, the left side of the body will be showing certain signs and symptoms which are not expected in a normal child.
However, it is possible for the health personnel to miss the presence of CP after delivery in cases where the problem is mild, or in events where the health centre lacks diagnostic facilities.
“CP comes in different types. For instance, here is a child who wants to greet, but he or she fails to because they cannot coordinate. Why, because there is damage in a portion of the brain called Cerebellum, which controls coordination. Other children will present stiffness that can be compared to a hard log. Even if you wanted to bend their elbows, you will not succeed. This is how muscles work, if one group contracts, the other group should relax so that there is movement taking place. However you will find that coordination lacking in a child with CP,” explained Sr Mweshi, who is also a lecturer at the University of Zambia (UNZA) School of medicine.
“But in circumstances where one part of the brain called the internal capsule is damaged, you expect children to sometimes exhibit spasticity (severe contraction of muscles).”
The prevalence of Cerebral Palsy in Zambia is unknown due to lack of research and documentation, but to help prevent the condition, experts advise parents to take their children to hospital in case of raised temperature that may arise from other diseases, such as malaria.
Nevertheless, what many may consider as a dilapidating condition, CP is not life threatening neither is it progressive. Children may die from other complications such as epilepsy which is common among children living with CP.
Sr Mweshi says, “Some children die at the age of 20 or 25 years old, although it’s very rare in Zambia to find somebody with CP live up to the age of 30 or 40 years old, because we do not have structures and facilities that can give them proper livelihood in terms of those that need to be independent. In short, we neglect them. There is stigma and so many other things that are connected to the problem.”
When a child has been diagnosed with CP and there are no indicators of another problem, physiotherapy is highly recommended. Medications, surgery, therapy, and assistive technology can also help maximize independence, reduce barriers, and increase inclusion, therefore lead to an enhanced quality of life of the child.
Sr Mweshi says the country has enough physiotherapists to meet the needs of CP patients. However, what is lacking and hindering the process of administering treatments is perhaps the long distance to hospitals that patients have to take. Although children never completely recover, some improvements are often recorded after extensive therapy and physiotherapy.
“When you look at CP and physiotherapy, you need a lot of patience. This is a very difficult process for the child. Other mothers get affected mentally and because they overdo certain things in order to see their children get better. Others get fed-up and become depressed, what I may see (as a physiotherapist) as an improvement may not seem such to them.”
One person who sees improvement is Clementine Muteteli, a resident of Kanyama. Her 10 year old daughter, Lillian Iradukunda has been in and out of the Zambian-Italian Orthopaedic Hospital since 2011 and has had several surgeries. Clementine does not remember how many surgeries her daughter has had, but she keeps track of the little progress that her daughter makes, such as how far she can stretch her leg now.
“Soon she will be able to stand on her own. Tomorrow she has another operation to straighten the bones in the hip area,” says Clementine with a smile while she unfastens the straps of her daughters Calipers to release her legs.
As I look at Lillian who was re-admitted to hospital two days ago, sitting on her mother’s lap and wearing a diaper, my eyes drift to the hip area, where I notice several scars. It’s evident that she has had several surgeries on the same area. I imagine just how hard life has been for both mother and child but when I lift my eyes up at Lillian, she gives me a huge smile and with much struggle, she says ‘I want yoghurt.’
Lillian’s mother, a Rwandese national does not speak English but is fluent in Nyanja. I ask if her daughter has been attending school, to my surprise, I am told Lillian learnt English at the hospital from doctors and nurses. In 2011, she spent five months in hospital.
Clementine looks exhausted but still optimistic and looks forward to being discharged and returning home to attend to her son who is currently in the care of her husband, but is often looked after by neighbours and church members while he goes out to look for odd jobs. The couple has no relatives in Zambia.
As I say my goodbye’s, Lillian’s list of demands grows from yoghurt, to the famous Chicco biscuit and chocolate, another huge smile appears when I promise to bring her special order the next time I visit. PYM
2 comments:
The facilities to assist such children in this country are limited. It is even worse when the extended family does not offer support. The stigma is still there. The only worry for such children is that what happens when the parents are gone. Because it is mostly the guardians who are primarily involved in taking care of them it may be difficult for other extended families to provide the same care. It is therefore, important that the extended family and also facilities are in place to provide the support system. Great piece in highlighting it. I just have one question is Celebral Palsy the same as Downs Syndrome?
in response to your question, no cerebral palsy is not the same as Down syndrome. cerebral palsy is an encephalitic disorder characterized by permanent non-progressing brain damage while Down syndrome is a disease caused by trisomy 21 which involves a mutation of a gene where it replicates more than a normal gene should. Nonetheless the presentation of cerebral palsy may sometimes be similar because both involve the delay in developmental milestones in a child as well as impaired motor function.
therefore the presentations may sometimes be similar but Down syndrome has a better prognosis that cerebral palsy.
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