Nine-year-old Massy Athieno is a Primary Three pupil of Amulwa Primary School in Tororo. According to her mother, Grace Achen of Amulwo village in Tororo District, she is a bright girl.
She explains that she gave birth to a normal child who developed convulsions at two weeks after birth and her head started swelling. "I had never heard of CURE hospital while the community around me called it evil spirits," she recalls.
A friend later directed her to CURE Children's Hospital in Mbale where Athieno was operated on.
You may refer to Athieno as a lucky girl as available medical reports indicate that many children suffering from Hydrocephalus - the disease she had suffered from - are likely to die by the age of two without operation. Her mother is now happy that Athieno can now attain an education like any other normal child.
Hydrocephalus ("water on the head") is a major problem among infants in Uganda, says Derek Johnson, the executive director of the CURE Children's Hospital in Mbale.
He discloses that the condition, which is caused by a blockage inside the brain, leading to interference in the outflow of cerebrospinal fluid, causes the head to swell, putting pressure on the brain, and if left untreated, will kill about 98% of children by the time they make two years.
"That's why neurosurgical intervention is required as early as possible but unfortunately, access to health care is amongst the biggest development challenges facing Uganda," he notes.
He goes on to clarify that early intervention helps to decrease the pressure on the brain sooner, thereby improving the long-term path to improvement.
A health worker attends to a child with Hydrocephalus at Katalemwa Cheshire Home. PHOTO/Gladys Kalibbala
Johnson adds that the longer the pressure on the brain, the more damage it can cause. "More importantly, for those cases, when infection is the cause [65% in Uganda], the longer the infection is left untreated, the more permanent damage is done to the brain.
"We have to remove the pressure and treat infections quickly," he advises.
Why the increase?
He further explains that Hydrocephalus is on the rise because the population growth rate is high, citing about 1.4 million live births last year which may climb to close to 1.5 million this year.
"Children born in hospitals usually do not acquire the infections that cause the post-infectious cases of Hydrocephalus. Pre-natal and antenatal care must improve for these numbers to drop," says the hospital director.
Medical reports reveal that in Uganda over 2,500 new cases of Hydrocephalus are reported each year. Conservative estimates also indicate that more than 6,000 Ugandan children are born with or develop a neurological disability every year.
CURE's Johnson says in Uganda, 65% of the Hydrocephalus cases seen are the ones caused by infections. The babies are born healthy, but they get sick and the disease develops.
Some cases of Hydrocephalus cannot be avoided, though. Premature births and Hydrocephalus caused by tumors or cysts cannot necessarily be prevented. However, nearly all of the post-infectious (acquired) cases of Hydrocephalus could be prevented.
"We're studying the reasons why these babies get these infections, but babies born at home, on mud floors, near cow dung, have a greater chance of getting infected," he explains.
Babies born in hospitals have a better chance of not getting these infections, he maintains.
Dr Peter Ssenyonga (pediatric neurosurgeon) at CURE explains:
Neonatal sepsis, meningitis (infections of the coverings of the brain and spinal cord) and ventriculitis (infection of the fluid spaces inside the brain) are the main kinds of infections in this disease.
As regards treatment, the world over, shunts remain the mainstay of treatment. Shunts are specialized silicone tubes that take fluid from the ventricles (spaces in the brain) into another space (usually the abdomen) where the fluid is then absorbed.
Because shunts are foreign to the body, they are subject to risks which may include; infections, fractures, migration, blockage, malfunction and disconnection. Shunts, once placed, are meant to remain for the entire lifespan of the patient.
There is an alternative method, the Endoscopic Third Ventriculostomy (ETV) which involves creating an alternative pathway for the trapped fluid at the base of the brain, using an endoscope to bypass the obstruction. To this, Choroid Plexus Coagulation (CPC) has been added.
CPC is the electrical destruction of the choroid plexus. Choroid plexus is the tissue that is responsible for making most of the fluid in the brain.
Combining the two procedures is the technique that was pioneered by Dr. Benjamin Warf, the first Medical Director of CURE Children's Hospital and carried forward by Dr. John Mugamba the current CURE Medical Director.
We have gained considerable success with treating Hydrocephalus this way. Our experience has made us the primary center in the world for treating the disease with ETV and CPC.
Johnson Derek (black coat), director for CURE hospital checks on children suffering from Hydrocephalus at Katalemwa Cheshire home. PHOTO/Gladys Kalibbala
Johnson adds . . .
The sources of the infections are not fully known, so we suspect it could be a spectrum of bacteria or viruses. We are studying the full spectrum of causative agents for all neonatal sepsis cases, along with our colleagues at the Mbarara University of Science and Technology (MUST), Penn State University and Harvard University (both in the USA).
We hope to better understand some of the contributing agents to the infections which lead to post-infectious ("acquired") Hydrocephalus in the near future.
Cost of having an operation:
The initial cost of the operation at CURE is US $1,750 (about sh4.5m) but after realizing that most families could not afford that much, it was subsidized to shs750,000. This includes the cost of the operation, tests, CT scans, medicine, accommodation and meals for the patient and one caretaker.
"If the family cannot pay 750,000 on the first visit, we work with them to pay in installments. It is still incredible that we are offering brain surgery for sh750,000."
He says Hydrocephalus requires surgical intervention and that CURE would not be able to subsidize the cost of treatment without corporate partnerships. "It cannot be treated with medicine only. There is a blockage in the middle of the brain that must be treated. We use medicine to treat the infections, but we must use surgery to release the pressure," Johnson explains.
CURE put in place monthly mobile neurological clinics in Mbale, Katalemwa, Gulu, Lira and Mbarara to make it easier for reviews for those already operated on.
Johnson points out that most parents delay to admit their infect children, sometimes after fruitlessly trying out traditional healers.
"Babies that come late do not do so well. We can save their lives, but their outcomes will not be so good," he warns.
Parents fail to take their babies for follow-ups after surgery which he says is very important in the first year after surgery. Parents have challenges but Johnson explains that the more the parents are involved and care for their children, the better the children do.
He cites cases of children with Hydrocephalus (and Spina bifida) who are high-functioning, bright boys and girls. "Those parents are providing the right care and love. If the parents neglect them, the children will suffer."
Ever since CURE subsidized the cost of surgery, Johnson says they have treated a lot more children, but admits the health facility requires more funds.
"If we are to continue offering surgery to 1,000 children every year, more Ugandans have to support the hospital. If we cannot find support from within Uganda, we will have to reduce the number of children we treat."