Hydrocephalus is a term derived from the Greek words “hydro” meaning water, and “cephalus” meaning head, and this condition is sometimes known as “water on the brain”. Hydrocephalus affects one in every 500 live births, making it one of the most common developmental disabilities. People with hydrocephalus have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability. The causes are usually genetic but can also be acquired and usually occur within the first few months of life due to examples such as haemorrhage, infections, stenosis etc.
Foetuses, 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 (which have yet to fuse) to bulge outward at their juncture points. The disfigurement can be extreme and disturbing. Infants exhibits fretfulness, poor feeding, and frequent vomiting. As the hydrocephalus progresses, lethargy and lack of interest in surroundings sets in. Later on, the upper eyelids become retracted and the eyes are turned downwards, there may be a reduction in vision. Movements become weak and the arms may become tremulous. The head becomes so enlarged that the child may eventually be bedridden.
Because hydrocephalus injures the brain, thought and behaviour may be adversely affected. Learning disabilities are common among those with hydrocephalus which is thought to reflect the distribution of nerve damage to the brain. Usually, hydrocephalus does not cause any intellectual disability if recognized and properly treated.
Hydrocephalus is routinely fatal without surgical interventions. Surgery involves the placement of a ventricular catheter (a tube made of silastic), into the cerebral ventricles to bypass the flow obstruction/malfunctioning and drain the excess fluid into other body cavities, from where it can be resorbed. Because the problem is inside the head, doctors rely heavily upon computer tomography scanning (CT scans), which may be used frequently to evaluate the condition of the disorder throughout the patient’s life to check that the shunt remains patent.
Since the cost of shunt operations and monitoring is beyond the reach of people in Burma, most children with hydrocephalus will therefore die. However, if they are able to make the journey to the Mae Tao Clinic and are referred to Burma Children Medical Fund (BCMF), they have hope.
See the inspirational video below of a young girl who had surgery in 2005.
- See a short post-op film of Htein Linn playing at the Mae Tao Clinic here: Htein Linn at the Mae Tao Clinic