Listening to Justine Nantumbwe while singing, one is left with no doubt; she would make one of the best vocal artists in Uganda, if well groomed. The 10-year-old, with much joy, interacts with anyone interested, and will always respond to every question thrown to her. Nantumbwe is among the many children suffering from hydrocephalus- a condition of accumulated water (cerebrospinal fluid) within the brain.
Annet Kyomuhendo the mother says, her daughter was diagnosed with hydrocephalus at three months. “We first moved to different hospitals and shrines before being referred to Mulago hospital but still, were not given proper treatment because it required Sh600,000= which we did not have at that time,” narrated Kyomuhendo.
It was at Mulago, where Nantumbwe’s mother found someone who referred them to Cure hospital in Mbale. “Reaching Mbale, it was more expensive than Mulago, but the former, allowed my daughter to undergo operation pending the payments,” intimated Kyomuhendo. She further explains that after her daughter’s first medical operation in 2010, she never went back for a follow-up because they had not raised funds to clear the previous medical bills.
Without knowing what to do next, Kyomuhendo lived with her daughter in that state for over seven years, even when the husband had abandoned them. “Recently, Justine developed a disorder which I had no clue about, and that’s when I went back to Mbale. With help of Patience Mbabazi of HSI, my daughter was operated again and now in a better condition though still suffering from the syndrome,” says Kyomuhendo.
A mother of three, contends that her first and last born who are now 12years and 6months respectively, did not suffer from the syndrome, leaving her perplexed on why Nantumbwe suffered the syndrome. Though cheerful and well understanding, Justine Nantumbwe does not attend school and spends most of the day’s time stationed in one place. “Most of the schools I have tried, showed no interest of admitting my daughter and yet those which would, are very expensive,” remarked Kyomuhendo, adding that, taking care of “such” children, is a full-time job which leaves parents with no time for other activities.
In the face of Covid19
The ripple effects of Covid19 have not spared the innocent souls suffering from Hydrocephalus and Spina Bifida. After the first Covid19 case was announced in Uganda on March 21, several directives were issued by president Museveni to curb the spread of Covid19. Among these, was a ban on public transport and seeking for permission from Resident District Commissioners (RDCs) if one had a patient to transport to hospital.
Maimuna Nakalema mother to a 4year old Isaac Magero narrated the hard-ship she goes through while seeking for medical review of her son who is also a victim of hydrocephalus. “If we have always struggled to get means of transport during normal times, just imagine what we are going through during this semi-lockdown,” phrased Nakalema.
Patience Mbabazi the director of Hydrocephalus and Spina Bifida Initiative (HSI) a body with a membership of over 80 parents of children suffering from Hydrocephalus and Spina bifida, noted that two children suffering from the syndrome, have so far died due to lack of immediate medical attention during this period of Covid19. “Most of our children were inserted in shunts to help in regulating on the overflow of cerebral fluid within their bodies. However, shunts have to be monitored by medics all the time, so that there is no blockage, yet it has been very hard for such mothers to travel hospitals during this period,” explained Mbabazi.
One specialized hospital handling the syndrome
According to Mbabazi, there is only one hospital in the whole of Africa, which is specialized in handling patients with hydrocephalus and spina bifida. “The hospital is found in Mbale, in Eastern Uganda and charges Sh950, 000= per operation,” intimated Mbabazi. She contends that, on top of the frequent medical visits, parents for such children must properly feed their children so as not to get malnourished, on addition to buying pampers everyday.
Micheal Ogwal a medical doctor at Cure hospital in Mbale says, Hydrocephalus is usually caused by blockage of cerebrospinal fluid (CSF) outflow in the ventricles of the brain. Dr. Ogwal explains that every human being has got CSF which continuously circulates through the brain, its ventricles and the spinal cord; which is continuously drained away into the circulatory system. “Alternatively, the condition may result from an overproduction of the CSF above the normal 500ml produced by the body everyday, or from complications of head injuries, or infections such as meningitis,” added Dr. Ogwal.
Isaac Emran also a medical worker at Cure hospital says, compression of the brain by the accumulating fluid may eventually cause neurological symptoms such as convulsions, intellectual disability and epileptic seizures. “Such signs may occur later in adults, whose skulls are no longer able to expand to accommodate the increasing fluid volume within,” explains Emran.
Fetuses, infants, and young children with hydrocephalus typically have an abnormally large head, excluding the face, because the pressure of the fluid causes the individual skull bones to bulge outward at their juncture points.
Dr. Timothy Kalule says, Spina bifida is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. The most common location being the lower back, “but in rare cases it may be the middle back or neck.”
Treatment of Hydrocephalus and Spina bifida
Dr. Ogwal advises women to take foods or medicines that are rich in folic acid prior to their conception. “On the 26th day after a lady has conceived, is when the brain and the spinal cord are formed, yet, most of the women realize their pregnancies, at least a month after conception. That is why, we advise them to swallow tablets rich in folic acid, prior to conception,” intimated Ogwal.
“60% of the children we treat, the cause of their hydrocephalus is due to birth defects and sometimes the use of local herbs applied by mothers,” noted Ogwal, advising parents to go for medical review before and during pregnancies.
The three medics explain that some of the methods used in treatment of Hydrocephalus, is Endoscopic Third Ventriculostomy (ETV) whereby a surgically created opening in the floor of the third ventricle allows the CSF to flow directly to the basal cisterns, thereby short-cutting any obstruction. The technique, known as ETV was pioneered in Uganda by neurosurgeon Ben Warf and is now in use in several hospitals across the globe.
Dr. Kalule says Hydrocephalus can also be successfully treated by placing a drainage tube (shunt) between the brain ventricles and abdominal cavity. However, there are some risks of infection being introduced into the brain through these shunts; hence the shunts must be replaced as the person grows.