Today I’d like to introduce you to Wairimu, who will be a regular contributor here. Wairimu is aunt to six-year old Safari. Safari is her sister’s baby, and owing to the close relationship between the sisters, Wairimu feels as though Safari is her child as well. Wairimu will be sharing with us insights about raising a child with special needs.

Safari fell ill just after birth and was later (much later) diagnosed with Cerebral Palsy (CP). Wairimu – who we will now call ‘Tata Nimmo’ (Tata means aunt in Kikuyu while Nimmo is short for Wairimu), will be sharing with us her and her sister’s journey raising a child with this disability.   

The beginning – Diagnosis

I remember Safari’s first attempts to call me.

Ta..ta..ta t..a…..he said repeatedly as the words struggled to form on his lips. But slowly and surely they came… and soon, everything was Tata. Safari calls me ‘Tata Nimmo’.

I remember his mother asking him some questions:

“Safari, who do you want to feed you?”

“Tata!” he would hurriedly exclaim!

When Safari was just three months old, we knew that something was wrong somewhere, though we could not tell exactly what. His head was still very wobbly and when we placed him on the sofa he would easily topple over so we would have to put a pillow on both sides to prevent him from doing so.

I remember when the rest of his agemates already had a few teeth, we remained patient, waiting for him to cut his first tooth. Worried, we asked a couple of doctors about his seemingly slow development. But the answer was always the same: that boys have ‘delayed milestones’, meaning they take longer to record milestones than girls of the same age.

And so 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 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. Interestingly, it is a doctor who diagnosed this condition during Safari’s six-day BCG jab at a public hospital in Pangani -Nairobi. Thankfully, the doctor had diagnosed him just in the nick of time. Because it was quite serious then. Safari was immediately 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.

Three months later, we went for a follow-up visit at the hospital and were grateful when he was given a clean bill of health.

But as I mentioned earlier, he was not developing at the rate of most children his age. While he was quite physically active, something still bothered us. But yet, our concerns were dismissed by doctors –where we were told we were ‘just another set of anxious mother and aunt’.

That is until one day a friend referred us to a public dispensary after noticing that he could not stand on his own at almost two years old. At the dispensary, the doctor prescribed vitamin C supplements for two weeks and asked us to be on the lookout for any changes.

To cut the long story short, it was only when he turned two years that Safari was diagnosed with mild Cerebral Palsy, a disorder that impairs control of movement caused by damage to the developing brain. CP is one of the most common causes of chronic childhood disability. A significant percentage of children with CP experience some level of mental retardation and may also have learning disabilities, vision, speech, hearing or language problems.

Following this diagnosis, we started therapy at Kiambu District Hospital. At least we knew now that there was a problem and a possible solution.

We believe that his sickness during those first few weeks contributed to his condition. Our conversations with other mothers who have special children with CP are almost similar; they all say that their children fell sick at some point soon after birth. For some, it was malaria, others meningitis, others something else. But there was a sickness involved somewhere in those first weeks.

Safari is now six years old. He is now able to walk, though in a mild wobbly manner. His speech is much improved and he is in school. He is in an integrated school -where they have both regular and special units. He is now in pre-unit. Next year he heads to class one! We are so excited!

Every time we reflect on these experience as a family, we often feel that had he been well-attended to earlier –the jaundice and the diagnosis of cerebral palsy, he probably would have made more progress by now.

It is because of our experience that I wish to share a few tips with all mums, especially new ones.

Tips for New Mums

• Safari was born in 2009 and by then we didn’t rely heavily on google to check his developmental milestones. But nowadays there is a whole lot of mummy bloggers talking about parenting and child development. Read their experiences regularly as you will always learn new things that will help you as you raise your children.
• Listen out for comments about your child from friends or even visitors. When I visited my sister when Safari was three days old, I noticed that his eyes were ‘quite yellow’ and pointed it to her. A doctor friend then advised us to put him in the sun for a while. Maybe it helped a little… During his development I would point out things like why isn’t he able to do this or that, things that Mama had also noticed but like we pointed out the doctors told us otherwise.
• As a mother trust your instincts. Be persistent even when the doctors say otherwise. Don’t be afraid to seek and consult widely, especially if your instincts say something is wrong. For us it’s the public hospital that was able to diagnose his CP.
• You are never alone, once you know what the problem is you realize there are others out there who are going through the same things. Keep strong.”

And that is Nimmo’s beginning. Do you have a child with special needs? How was the diagnosis made? Was it made early, or did it take a while just like Safari’s?