Joy and pain of raising a child with cerebral palsy By a Guest author: SIMON MBURU

When Susan Nyambura’s son was diagnosed with a developmental disorder immediately after birth, her husband abandoned them. Six years later, she soldiers
on.

“My name is Suzan Nyambura. I am a mother of a six-and a half-year-old boy. I still remember how my then-husband and I had eagerly waited for the birth
of our son, Gabriel Kamonzo.

In fact, the sheer ecstasy that overwhelmed me when I first took a pregnancy test and got positive results in early 2012 is still deeply etched in my mind.

I had a smooth pregnancy up until I went into labour that September. I checked in at a private hospital in Mombasa for delivery.

By then, my water had already broken. I was immediately admitted to the hospital’s maternity wing. Over the next two days, I underwent an extensive and
excruciating labour process.

WORRY, PANIC

The doctors examined my birth canal and concluded that I had not dilated enough. At some point, I requested for a caesarean delivery. But my request was
turned down. The doctors said I was not an emergency case.

I seemed stuck in labour. Painful but unfruitful contractions kept coming and going. But eventually, on September 12, I gave birth to a bouncing baby boy.

Seeing my baby pop out erased all the pain, struggle and shame that the labour and delivery process had bestowed on me. Tears ran freely down my cheeks.
At long last, here was my beautiful God-given son!

This joy, though, did not last. In fact, it ended as soon as the doctors started to examine my son moments after birth.

Instead of a sigh of relief and congratulatory glances, I saw worry and panic on their faces. Their facial expressions betrayed their concern that something
had gone wrong.

EXAMINATION

Then it hit me like a thunderbolt. My son had not cried upon birth! Although I was a new mother, I had heard that newborns were supposed to cry once they
popped out.

Failing to cry was an indicator of a defective birth process. I desperately tried to inquire what was wrong. But I was reassured that all was well.

I was told to stay put and wait for my episiotomy stitches. This was really the least of my concerns.

Later on when I left the delivery room, I was informed that the doctors had taken my son to the nursery, where they were examining him.

They found out that Gabriel’s neck was abnormally weaker. This was compounded by his failure to breastfeed when they brought him to me.

Over the next one week, I fed him on glucose and warm water while the doctors sought for a diagnosis to his problem.

DIAGNOSIS

On October 7, 2012, I was transferred to Coast General Hospital. By then Gabriel was 10 days old.

The doctors recommended that we observe him over the next three months and see if his neck would firm up. But it didn’t.

By the third month, I took him to Kenyatta National Hospital, where he was diagnosed with cerebral palsy. This is a medical condition that affects a child’s
muscle tone, movement or posture.

It is caused by brain damage that occurs before or during a baby’s birth, or during the first three to five years of a baby’s life. This diagnosis left
me utterly terrified and confused.

My baby was so tiny and helpless! Yet, the more I inquired about his condition the more scared for his life I became.

I was afraid that he would develop breathing problems, have no control of his bladder and bowel movement, and drool throughout the rest of his life.

ABANDONED

Perhaps I would not have worried too much if someone had held my hand and told me that it was all going to be okay.

But there was no such person I could have leaned on! Friends kept away, and some of those who reached out claimed that my baby was cursed, and that I needed
to take special prayers and cleansing to cast out whatever spell had befallen him.

The most disheartening of all was the abandonment by my baby daddy. He said Gabriel was not his son.

Although I had named my son after his father, he completely rejected him after the diagnosis.

He claimed that he could not have fathered a child with such a disability. Over the next few years, I tried to reach out to him because I wanted my son
to have a father in his life. But he shut us out completely.

#TOUGH TIMES

It is now six years since my son came into this world. We are still on the recovery journey, but raising him has not been easy at all.

There are some days when his condition becomes too overwhelming for me, especially when he is unwell.

I cry a lot and at times question God on why my little boy has had to suffer so much. It really breaks my heart when I see him struggle to meet basic development
milestones.

His growth is very slow. Today, he can’t sit on his own and relies on a wheelchair. He also can’t talk or even walk.

But perhaps the hardest and most tormenting moment is when I am unable to provide food because I am joblessness.

I remember that I had to start working as mama fua (laundry and cleaning lady) in order to fend for him a few weeks after his birth.

#HEALTHCARE

It was not easy. I was forced to go knocking door-to-door asking for home cleaning jobs with my ailing son strapped on my back.

A few weeks ago, I left my son behind in Nairobi and travelled to Mombasa, where I am currently looking for a job as a bouncer.

I have pegged my hope in God that something will show up and give me the much needed income so that I can sufficiently care for my child.

He is currently not undergoing any medication or therapy, and I would wish to enrol him in a corrective physical, occupational and speech therapies that
will help improve his life.

Above all, I have learnt to keep my head above the water by constantly reminding myself that this is my son, and God had a good purpose for giving him
to me.
Every day, I pray for him. I hope one day he will realise just how much I love him, and how much he means to me.”