My son's Down's syndrome inspires hope for others

Whenever you ask an expectant mother if they would prefer a baby boy or baby girl, many would say, “I just want a healthy baby.”

A healthy baby is what Lilly and her husband Ken Mugane hoped for. However, 3 months after delivering their last born and only boy, Munene, they were informed that he had Down’s syndrome.

I’m meeting Lily at their home eight years later. She opens the gate with Munene in tow. Inside the house, we meet Munene’s elder sisters. Moving around are five dogs that Munene likes to play with. Lily directs us to the backyard where we hold the interview.

“It was just a normal pregnancy, but there was exhaustion and the doctor kept telling me that the reason could be that I had carried two other pregnancies. I gave birth through the caesarian section just like the other pregnancies,” she says.

Lily narrates that, at three months, she noticed that Munene had not reached the milestones that were expected at that age.

“His body was not firm, he was still wobbly. We consulted the doctor and medical tests were recommended with the doctor telling us that there were Down’s syndrome suspicions. The samples were taken to South Africa and, for the two weeks as we waited, they gave us materials to learn about Down’s syndrome,” she says.

Lily says that at the time she had not known about Down’s syndrome, but from the materials, they learnt that if the results turned out positive then their child would take time to reach several milestones in life. He would be different physically -- with a flattened nose, small head, small neck, delayed development, learning disability, short stature, and speech delay. But given the right attention and investments, he would thrive.

When the results came back positive they thought they were ready - until their doctor broke down.

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“After seeing the way she was affected, that is when we realised the situation was serious - because we were laymen and she is the expert. But that was her human side because she has been with us all through our parenting journey,” she says.

Mourning period

They started physical therapy immediately. After only reading about Down’s Syndrome, this is when experienced all the negativity.

“We started getting stares from strangers. It was at that point that I noticed my baby was different. He started looking like the pictures we’d seen of people with Down’s syndrome. That was now my mourning stage,” she says.

Some of the questions she asked herself during the mourning period were, “What did I do, why us, is there something different I should have done so that he turned out like the others?” 

She explains that being human means people always look for something or someone to blame.

“But there was no one to blame because the child is just born with an extra chromosome,” she says adding that when she and her husband sat down, they concluded that they needed to change their mindset. 

Telling the family

 “We had to tell our extended family, so changing our mindset was very important because the way we saw him is the same way people would see him. But we arrived at that mindset after the mourning period,” she says.

They told the family about Munene’s condition and gave them hope by ensuring them that he would reach milestones but it might take time.

“They asked where the condition came from but we told them that we did not want to take that route because it would not solve the situation. The baby was here already so we wanted to focus on his wellbeing. We allowed them also to mourn, some also said they would pray,” she says.

During the interview, Munene walks in to tell us about the names of the family dogs. He walks and pets the mother dog that is lying by the door. He picks up a storybook and settles down to read then comes back after a few minutes to say he was on halftime, referring to his love for football.

“He really loves football,” says Lilly before we continue with the interview.

“We accepted he was different but life had to go on, so the crying had to stop, yes we will have to put in more effort but he will thrive,” she says

What is Down’s Syndrome?

According to Dr Peter Gakuna from Nairobi West Hospital, Down’s syndrome is a congenital disorder (that a child is born with) that results from a chromosomal defect. A chromosome carries the genetic material of a cell.

What is a chromosome?

These are thread-like strands containing hundreds, or even thousands, of genes. The human body is made up of billions of cells. Without a microscope, the cells are too small to see. Inside most of those cells are chromosomes.

Chromosomes are genes that determine physical traits, such as the colour of your eyes.

A human being has 46 chromosomes but someone with Down’s syndrome has an extra chromosome making them 47 chromosomes, meaning one extra chromosome is found on chromosome 21, called trisomy 21.

“Down’s syndrome happens when the chromosome number 21 fails to separate during mitosis (cell duplication) leading to an additional chromosome thus the name trisomy 21,” he says.

What causes Down’s syndrome? 

Dr Gakuna says Down’s Syndrome leads to several physical defects involving various parts of the body including the face, heart and brain. The exact cause is not known but it is associated with advanced maternal age (mothers who conceive when they are older, say above 40 years)

According to Dr Gakuna, it happens once in every 800 live births. 1:800. In Kenya, almost 3,000 babies are born daily which means 2-3 are born with Down’s Syndrome every day.

Can it be diagnosed before birth?

“Due to advanced technology and skills in ultrasonography, it is possible to diagnose Down’s Syndrome in utero (before a fetus is born). A skilled sonographer can detect the obvious physical defects associated with the condition,” says Dr Gakuna.

He adds in case it is not diagnosed before birth, the features are quite obvious after delivery. These include a flat nasal bridge, a big tongue (protruding tongue), a small mouth and lips, a short webbed neck, small upper limb digits, a flat occiput, and one palmer crease among others. It is thus a clinical diagnosis after birth (does not have to involve lab tests/scans to diagnose).

Dr Josephat Atandi, says that a child with Down Syndrome has an IQ of between 35-70.

When a woman gets pregnant when she’s older chances of getting a child with Down’s syndrome could increase. If a woman is above 45, the chances are 1 in 35.

Dr Atandi says that there’s no cure but there are treatments that would help a child to cope. A child born with Down’s syndrome can live up to 60 years unlike before where most lived up to 20 years.

Judy Mwongeli, a speech therapist says that her role includes supporting and promoting children’s language development from 0-5 years.

“A child with Down’s syndrome should start speech therapy as soon as possible, as soon as the parent realises that the child does not respond well, and does not have enough words,” she says.

Judy believes that early intervention and intensive therapy can enable a child with Down’s syndrome to speak like a typical child.

Pillar of strength

Lily says that being brought up in a house full of girls, she’s always wanted to be a mother of girls because she believed she would not know how to raise a boy. For the first two pregnancies, she prayed for girls and got her heart’s desire.

While they were trying for a third child, her husband requested her not to pray for a girl any more.

“So I told him if you want a boy, I hope you are ready to raise a boy. So when we found out it was a boy, he was excited. He was all in and they bonded for the 3 months before we found out he had Down’s Syndrome,” Lily narrates. 

He would later encourage other fathers with children with Down’s syndrome and started a WhatsApp support group for men.

Meeting other mothers 

Lily says that, in the first months, she had not heard of anyone with Down’s syndrome and they wondered if they were the only ones in Kenya. Her sister, however, knew someone who had Down’s syndrome and they planned a meeting.

“I called the lady, her daughter was 3 years old then, so I had so many questions. How had she managed for 3 years? Did the baby crawl and after how long was she walking?” she says.

Eventually, they agreed to meet and, through word of mouth, they ended up meeting five other mothers.

“When we met, we cried, everyone was sharing how they were told the first time. After that meeting, we created a WhatsApp group then later decided to form an organization called T21 Family Support Organisation,” Lily says.

“Why we chose Trisomy 21 and not an organisation with the name Down’s syndrome is because people will think we are down,” she says laughing. “You know it was called Down’s syndrome because the man who discovered it was called Down,” she adds.

During the interview, Munene’s teacher, Ann Ndung’u, walked in for the afternoon home classes.  

“I have been teaching him for the last 1 year, and I realised that they capture the content like other students and can prosper just like the others,” she says.

Ann says that the biggest challenge is that parents withdraw their children from normal lessons and feel they can only do a certain level of education, mostly skill-based. While other parents feel there’s no need to give their children any form of education.