When Sharon Akinyi gave birth to her fourth child Stephen Omondi, she was a worried mother. Not only did her newborn baby have deformed legs and fingers but as days passed by, the size of his head was growing at a high rate; disproportionately so.
However, doctors advised that there was nothing to worry about and that they would focus on strengthening his legs and hand muscles.
“As days went by, I realised that something was seriously wrong. I told the nurses that he had difficulties in balancing his head while sleeping.”
The nurses however didn’t pay her any mind and explained that all they needed to do was bandage his deformed little legs and hands.
“I was deeply frustrated because I knew they were not making a true diagnosis,” she says.
Four months later, during a clinic visit, the doctors seemed to finally see what she had been talking about all along. Omondi had a bigger than normal head, and they recommended surgery. A shunt -a thin tube with a valve, was placed in his brain to drain away excess fluid that had built up in his brain.
“If it were not for that I guess his head would be much bigger than it is today,” Sharon says.
Omondi suffers from a condition known as hydrocephalus.
Dr Lee Ogutha, a neurosurgeon explains that hydrocephalus is a condition where the amount of fluid in the brain, medically referred to as Cerebral Spinal Fluid (CSF) is increased.
“A child can develop the condition before birth, or acquire it. A child may be born with a blockage in the pathway that allows fluids in the brain to flow normally. But if it has nowhere to go, it fills up the brain, a situation that results in the enlargement of the head,” he explains.
Omondi was born with the condition which unfortunately went undetected after birth.
Data on hydrocephalus is not accurately documented in the country. But global data puts it at 3 for every 1,000 children. “The condition is common in the country because almost every doctor has had a chance to treat such babies after birth or during clinic reviews. It cannot be easily misdiagnosed due to the noticeably big size of the head,” says Dr Ogutha.
What causes it?
“There are other things that can make a child to have a large head, like congenital problems that can be misdiagnosed,” he notes.
But for the hydrocephalus, the diagnosis is very straightforward: Look at the child measure the head, compare measurements to normal head growth chart and you have your findings.
“For Omondi’s case, were there qualified doctors in the hospital where he was born or going for checks, then a true diagnosis would have been made much earlier. When detected early, even though it can’t be cured, appropriate early treatment can ensure the child leads a normal life with few limitations.”
The condition can also be detected before the baby is born. “An ultrasound on the baby’s head can reveal it. The ultrasound is done at between 15 and 35 weeks of gestation. It is important that mothers adhere to antenatal clinics. Also, a CT Scan of the brain can be used to make a diagnosis after birth,” he says.
In cases where they find out that a baby’s head is larger than normal circumference, a C-Section delivery is recommended.
Sometimes a baby can be born normal-looking but development of symptoms like convulsions, poor feeding, prominent veins on the scalp, skull bones appearing separated and eyes appearing to look downwards may be indicative of hydrocephalus.
“Hydrocephalus is however not a death sentence. Affected children do grow into adulthood, as long as the condition is diagnosed and treated early. At an advanced stage, the likelihood of severe complications and death is high,” says Dr Ogutha.
Children or adults with the condition may have abnormalities in the brain and delayed development. Some may develop intellectual challenges.