We Were told that ‘Boys have Delayed Milestones’ so we Needn’t Worry. But they were Wrong. Our Son had a Problem

Wairimu is aunt to seven-year old Safari. She dots on the young lad, who has a special place in her heart. Wairimu and Safari’s mom are twin sisters, and the closeness between the sisters has made Wairimu assume many of the responsibilities of raising Safari, who has special needs. Today, Wairimu shares with us the experiences of raising Safari, including the pursuit of an education for him. I welcome you to read her story*.  

“When Safari was just three months old, we knew that something was wrong with him somewhere, though we couldn’t tell exactly what it was. His head was still very wobbly and when we placed him on the sofa, he would easily topple over so we had to put a pillow on both sides to prevent him from doing so. Worried, we asked some doctors about his seemingly slow development. But the answer was always the same: that boys have ‘delayed milestones’, meaning their growth lags behind that of their girl peers.

And so assured, we waited and waited…..and continued waiting….

But as we continued waiting, one particular incident was never far from our minds. This was something that happened when he was a newborn.

At only six days old, he had suffered jaundice. Many babies experience mild jaundice, which is a yellow tint to a newborn’s skin and the white part of the eyes. This is a sign that there is too much bilirubin in the baby’s blood. But it usually gets better or simply goes away on its own within a week or two –without causing any problems. However, in rare cases, if the bilirubin levels remain high and without appropriate medical attention, it could lead to brain damage called kernicterus. That is apparently what our baby had. Neonatal kernicterus. Safari was admitted to Kenyatta National Hospital, where he underwent a blood transfusion and was placed under photo-therapy. I remember his little eyes being so tightly bandaged to ensure that no light reached or affected them. I wondered if it hurt him.

But as I mentioned earlier, he wasn’t developing at the rate of most children his age. Something about him still bothered us. At almost two years old, he still couldn’t stand on his own, while his peers were running. But yet, we kept being told that ‘boys achieve their milestones late, so just relax, there’s nothing wrong with him’. Unsettled, we took him to the hospital and eventually, we were given a diagnosis of Cerebral Palsy, a disorder that impairs control of movement caused by damage to the developing brain.

The news was hard to take in. We believe that the neonatal kernicterus contributed to his cerebral palsy. Interestingly, the conversations we’ve had with other mothers who have children with cerebral palsy are almost similar; they all say that their children fell sick at some point soon after birth. For some, it was jaundice, malaria, others meningitis, others something else. But there was a sickness involved somewhere in those first weeks. Same case with Safari.

After we were told he had cerebral palsy, I admit we struggled to accept that his special needs were going to be with him; with us, for the rest of his life. It was slowly sinking that it was not something Safari would outgrow, and there was no miracle cure anywhere…

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