Source: Nairobi Star
By: Wacui Makori
uesday, 11 October 2011 00:24
Whenever we think of childhood illnesses, malaria, diarrhoea or pneumonia seem to just jump at us, what about those illnesses that no-one ever talks about? Diseases like sickle cell which can ravage a child’s body and make life a living hell.
When Caroline Sidi of Tezo village in Kilifi District gave birth to her fourth child Ken in 2004, she had no reason to suspect that he may have sickle cell disease. After all, she had given birth to three other perfectly healthy children. Sidi however began to suspect that all was not well when baby Ken began to fall sick frequently. “He would cry a lot,” she says. “He always had one health problem after another and a cold that just wouldn’t go away.”
These in and out visits to the hospital continued until just before Ken’s second birthday when his leg got swollen and the swelling would not go down despite all the doctor’s efforts. “I was fed up of all these uncertainties,” Sidi says. “I was not willing to keep giving my young child medication without knowing what the real problem was. I finally took Ken to Malindi district hospital and asked them to run comprehensive tests to find out what was ailing my son.” One of these tests, Sidi tells us, was for sickle cell and after 24 hours it was confirmed that her son did in fact have sickle cell disease.
“When I got this information,” she says, “I did not fully understand what it meant to have a child with sickle cell. The information I received from the hospital was not enough since they only told me to make sure that I took him to hospital immediately he complained about any pain. I felt confused and frustrated since it seemed like my child was always in pain, I did not know what to do to improve the quality of his life and I did not know what to expect. I thought my child would surely die from this disease.”
Sidi’s experience is not an isolated case as Tom Williams, a researcher with KEMRI-Wellcome Trust in Kilifi, explains. Williams, who specializes in diseases of the blood, estimates that about 1% of Kilifi’s population is born with sickle cell disease yet awareness about this disease and its management is wanting.
He also notes that sickle cell is prevalent in malaria-prone areas, which makes the Coast and Nyanza provinces particularly susceptible to this disease. Available data further proves that worldwide, Africa, specifically West African nations, has the highest occurrence and that children with sickle cell who do not have access to proper healthcare often do not make it past their second birthday.
According to Williams, the cause of this premature death is due to the effect this disease has on the body. “A child with sickle cell disease,” he says, “has red blood cells that are abnormal and sickle shaped, instead of the normal round shape. It is this shape and the abnormality that causes problems to the patient.”
He says that the sickle shape makes the cell movement through the veins rather difficult thus causing the patient extreme pain while the abnormality causes the following: makes the person extremely susceptible to severe bacterial infections which can result in diarrhoea, fevers among other ailments. The person also endures extremely painful joint attacks, anaemia due to reduced blood supply and may have a swollen stomach due to enlarged lungs. The disease can also affect the heart leading to heart failure and the person’s bones and muscles tend to be so weak, such that they cannot withstand much exertion.
Sidi is very familiar with all these symptoms—especially the last one, which is probably the most difficult for children. “Because his muscles tire easily and begin to hurt,” she says, “we have to regulate Ken’s play time so that he does not get physically exhausted. If he gets fatigued or emotionally distressed, it can trigger a host of other complications.”
Beyond this, there are many other complications Sidi has to contend with on a daily basis. She explains: “Out of my five children, Ken is the one who has cost us the most, in terms of time, commitment and finances. Though he goes to school, I have to remain in constant touch with his teachers throughout the day to ensure that he is okay. This means that I cannot travel or be far from him because he may need me at any time. We also have to watch his diet and make sure he has plenty of fruits and vegetables. Sometimes we are unable to afford this for all the children and though the others know he is sick, I know that they sometimes feel left out due to all the ‘special’ treatment we give Ken.”
Even with this broad range of physical impairment, financial burden and emotional challenges the disease presents to families, and despite being a significant underlying cause of death for newborns and children under five, Williams observes that sickle cell disease is not deemed a priority on the national health radar. This means that there are no specialised clinics to deal with the disease, no readily-available information for parents and no civic education conducted in sickle cell prone areas to encourage adults to get tested before they have children. The disease – as he says remains “hidden, largely unknown and subject to much speculation.”
While the numbers may not be large enough for public health officials to declare a crisis, Kenyan children with sickle cell disease may not benefit from the ongoing Millennium Development Goal strategies one of which aims to reduce child mortality rates by 2015. The governments’ priority has led to focus on ailments with greater catastrophic rates like malaria while ignoring the seemingly ‘smaller’ diseases. Yet as Williams so aptly notes, “Sometimes, all that is needed to counter these ‘second rate’ illnesses is distribution of accurate information.”
For example, with accurate information, Williams argues that couples considering marriage, and those who are already parents, can get tested to determine whether or not they are carriers of the sickle cell trait (that would mean they are highly likely to produce a child with sickle cell disease). This information can then empower and encourage parents to ensure their children are tested at an early age. According to Williams, if detected early, the chances of dying from sickle cell in childhood is reduced by nearly 10 per cent within the first year of life. Early detection also gives parents peace of mind as well as doing away with speculation and stigma.
Another solution would be to have various stake holders in the health industry launch community-based initiatives appropriate for the communities they work with. Such an initiative in 2003 led to the launch of a specialised sickle cell clinic at the Kilifi District Hospital, operated by the KEMRI–Wellcome Trust Research Programme. According to the clinic’s officer in charge George Mochama, the clinic was initially started to cater for children under age 12. But its clientele now includes those 18 and older, “This is proof,” he says, “that with proper management, sickle cell disease need not be a life sentence.”
As the only specialised sickle cell clinic in the entire Coast Province, Mochama and his team have a full case load of patients during its Friday operating hours. “We see approximately 40 patients each week, 30 scheduled and at least 10 unscheduled who may be going through a sickle cell crisis and require immediate medical attention,” he says.
According to Mochama, proper management of sickle cell disease requires a consistent, long-term strategy. He explains the Kilifi approach: “At the clinic, we conduct a routine check up which involves a complete medical examination involving blood work and urine analysis. We also check on the state of the liver. Our patients are then given antibiotics to keep infections at bay, pain killers to use when they are in pain as well as supplements such as folic acid, or iron supplement to boost their haemoglobin levels. We follow up on our patients on a three -onth schedule whereby we see them once every three months.”
Undoubtedly, this type of strategy may be deemed costly in a developing country but research shows it improves quality of life and provides more time for children with sickle cell. It also builds trust between clinicians, patients and their caregivers. A fact that Sidi, who attends the Kilifi clinic regularly, can attest to:
“Before we started coming here,” she says, “Ken was constantly in pain and he cried a lot. We had incidences of his stomach getting swollen due to his lungs enlarging and constant stomach pain due to trouble with his spleen. But since coming here, I have seen the quality of his life improve greatly and he has even become one of the top performers at his school. I now know that there is hope – please tell parents to take their child to clinic or seek medical help and not just keep them at home.