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MY STORY: I’ve thrived in spite of a birth defect

Saturday March 2 2019

Chelmis Muthoni Thiong'o was born with a congenital defect called bilateral cleft lip and palate.

Chelmis Muthoni Thiong'o was born with a congenital defect called bilateral cleft lip and palate. PHOTO | COURTESY 

RACHEL WAMBUI
By RACHEL WAMBUI
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Chelmis Muthoni had her first surgery to correct a bilateral cleft lip and palate when she was nine months old. She later underwent three more operations. Growing up, she was bullied by some of her classmates as they did not understand why she looked different. The software engineer shares her journey with Rachel Wambui.

“My name is Chelmis Muthoni Thiong’o. I am 25 years old. I am a systems developer at Data Intergrated Ltd, an ICT company that offers payment solutions. I graduated from the University of Nairobi with a micro-processor technology and instrumentation degree; a combination of electronic engineering and computer science. Today, I’ll be travelling to London as one of the 16 African innovators shortlisted for the Africa Prize Engineering Innovation.

I was born with a congenital defect called bilateral cleft lip and palate. A cleft lip is when there’s a separation on the upper lip (bilateral if there’s a gap on both sides of the lip). A cleft palate is a gap on the roof of the mouth such that there is an opening into the nose. Both conditions are treatable through corrective surgery, orthodontic and speech therapy. I had my first corrective surgery when I was nine months old. The second one was a year later. Both of these were to repair the cleft lip.

The third procedure was when I was four years old to repair the palate. I had the fourth one at the age of 18 years old. This was to revise the lip. As I grew older, the area with the scar tissue pulled back as it wasn’t growing at the same rate with the rest of the body. My most recent procedure was last year which was to repair both the palate and give the lip a better appearance.

CHALLENGES

Most people with a cleft palate require orthodontic treatment. I have a few missing teeth so sometime in the near future I might have to explore the idea of getting artificial teeth. But right now my priority is to go through a remaining procedure on the palate.

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I can’t speak much about my speech therapy sessions when I was younger, but what I remember is my parents asking me to read my homework out loud to them. If a child gets their palate repaired when they can already speak, then they have this new feature in their mouth that they may not know how to use. Speech therapy teaches us how to use various organs to make various sounds.

After my surgery last year, my speech went a bit off because it was an intense change of the structure of my palate and I had to go through speech therapy sessions.

Growing up was a challenge, especially at school because other children did not understand why I looked different. So there was some bullying. But my mum was keen on making me aware of my difference. She would say, ‘Everyone is different, everyone has their challenges. The only difference is that yours is on the outside.’ This actually made me feel special — because I was the only one whose challenge was on the outside.

My transition to high school was smooth because I was admitted to a school that my sister has just graduated from. She introduced me to her friends, so I would say I had ‘protection’. This might sound funny but I wore braces that people thought were accessories. I would experiment with colours and design, which turned out to be a fun and cool aspect to it.

Of course there are times when I wish I was not born with the cleft but that statement that my mum kept telling me — that I am special — made me have a really positive outlook to life.

LIFE CHOICES

A lot of decisions I have made in my life have been influenced by my health. For instance, when I completed high school, I wanted to join Moi University to do dental surgery; inspired by my dentist who has seen me through my whole orthodontic treatment. But my mum sat me down and said; That’s a very good thing but imagine the struggle of having to frequently travel to Nairobi for your appointments?” So I went back to the drawing board.

Around that time, I heard this story on the BBC about people attaching sensors on live cockroaches and sending them to inaccessible disaster zones. That really fascinated me. I had always loved physics and mathematics. That’s the moment I made the decision to study tech at UoN.

When I was transitioning to the job market, I had fears of how people would perceive me, or whether my boss would be OK with me being away from work every now and then. But my current workplace is extremely accommodating. I am about to enrol for my Masters in the same field. I love tech and what you can do with it. I am proud to be a part of Kenya’s vibrant tech scene.

A lot of people with cleft don’t look at themselves as a people who can fit in, let alone thrive. My goal is for everyone to see that I went to school, I graduated, I am now working and I have an active social life. You can do anything you want. You can lead a normal life.

People ask me whether this is a disability. I tell them I am not disabled because I have gone through treatment. But one can say that someone who hasn’t gone through treatment has a disability — they often have issues with speaking, breathing, hearing and feeding.

Most children with cleft can’t breastfeed. And then of course there is the stigma. Luckily, free treatment is available. I have never had to pay for any of my procedures as they were facilitated by NGOs such as Operation Smile, Smile Train and Help a Child Face Tomorrow.

Recently, the government has launched the Neglected Surgical Disease Eradication campaign. In partnership with Smile Train, everyone born with cleft lip/palate will get free treatment.

Before 2015, I would have been concerned if you approached me and wanted to talk about my health as opposed to my professional achievements. But after 2015, I started volunteering with Smile Train. That’s when I decided to own it. People started telling me that I inspired them — perhaps because they saw me working hard and still smiling amid going through numerous doctor appointments.”

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