Please don’t label my precious children; focus on their abilities 

Sylvia Moraa has always moved to her own beat. Whether competing in beauty pageants or wearing the hat of a mother, she has lived life on her own terms.

“I am the reigning Ms Africa Elite 2020, Ms Elite Face of Africa, and Ms Africa United Nations,” she says with her signature brilliant smile which masks the pain and challenges she's had to overcome as a parent.

In this year’s Africa Pageants competition, Sylvia won three titles and 19 awards. In addition, she broke two records in the 20-year history of African pageants. In March next 2021, she will represent Kenya and Africa in the Miss United Nations International Pageant finals in Canada.

But the crown she’s proudest of is being the mother of her three sons.

Two of her sons are special needs children. Her firstborn, Daniel, is 14, while Andrew and Brad are 10 and eight respectively. For Sylvia, the three boys have been the anchor of her life. Andrew has Lennox Gastaut Syndrome, a condition on the broader autism spectrum. Brad has Attention Deficit Hyperactivity Disorder.

Smooth pregnancy

She had a smooth journey when she was pregnant with Andrew until week 34 when her water broke while at work. She was 26 at the time. 

“The doctors took a scan and noticed that my amniotic fluid levels had reduced,” says Sylvia, who is now 36.

The doctors decided to wait for at least another 72 hours to observe if the fluids would increase. Three days later, the situation remained the same. They decided to induce labour.

“They gave me an injection to strengthen the baby’s lungs. This was followed by an induction which got me dilated by only two centimetres.”

After two more inductions and 48 hours of labour, it became clear that all was not well. The doctors decided to perform an emergency cesarean section (CS).

When Sylvia woke up after undergoing the CS, she was told that her new-born son had been incubated. 

“I insisted that I wanted to see him. The doctors obliged.” 

Sylvia says that when they attempted to bring out her baby, he started turning purple.  

“They immediately put him back in the incubator, but that was the first most prominent sign that all was not well with him.”

Four weeks later, little Andrew developed jaundice. Then he started struggling to pass stool.

“I consulted a gastroenterologist who after evaluation diagnosed my son with lactose intolerance and reflux. It was also noted that his reflex was too high.”

Three months after Andrew’s birth, Sylvia’s father noticed yet another bad sign.

“He’d come to visit. While holding Andrew, he noticed that his neck was not as strong and steady as it should have been at that age.”

By the seventh month, Andrew started experiencing convulsions.

“We had been going to and from the hospital. When the convulsions came in, they wiped off all the progress we had made.” 

“The diagnosis left me feeling like someone took me to a forest and asked me to make a way out without a map. Depression sank in, medical care costs increased. I felt helpless. I wondered where to get information on what autism was.” 

“It broke my heart to hear that my child was different and wouldn’t be able to live a normal life.”

Stopped crawling

Sylvia says her son forgot everything that he had learned since birth.

“He had started crawling then he stopped. He even stopped making the bubbling sounds babies make,” she says.

She sought advanced medical help at the Aga Khan Hospital.

“At Aga Khan, we were referred to a paediatric neurologist who recommended blood tests, a Magnetic Resonance Imaging (MRI) scan for the head, and an electroencephalogram (EEG) test.” 

An EEG test evaluates the electrical activity in the brain. An MRI is a scan that uses radio waves to create images of the organs and tissues in the body. These tests brought out bad news. Andrew had sclerosis in his head and high electric brain activities. To stop the convulsions, the doctor put him on medication.

At around age four, Andrew was diagnosed with autism spectrum disorder (ASD). These test results were further narrowed down to a diagnosis of Lennox Gastaut Syndrome (LGS) in 2018. By this time, Sylvia had already fallen pregnant and delivered her third-born son, Brad.

“I had found out that I was pregnant with Brad two days after the results of Andrew’s MRI scan showed that he had sclerosis.”

Her third pregnancy could not have come at a worse time. She always feared how she would cope, and if the baby would be delivered safely and soundly. Her fears came alive when she started having complications.

The pressures of maintaining her family, her young business, and raising her needy child had become overwhelming. At week 33, she was admitted in hospital for a week.

“I felt weak and pressured, but the doctors couldn’t find what the problem was from the tests they took,” she says.

Sylvia was discharged from hospital and asked to report back at week 36. 

“They said they couldn’t wait, and once I got to week 36, they would just have the baby delivered instead of taking a full-term risk.”

At week 36, Sylvia went in for a caesarean section delivery. 

“It was during the delivery procedures that my doctor realised that my previous CS scar was giving way, and the baby was getting exposed slowly by slowly. The doctor said that my baby and I would have died if we had waited an extra day.” 

Fortunately, she delivered safely. 

“Brad weighed 2kg at birth. He was so small.”

As Brad grew up, Sylvia says that she had to juggle between the special care Andrew needed and the attention that her firstborn Daniel and new-born Brad needed.

“Perhaps out of the pressures of raising three children, I did not notice that Brad was delaying some milestones.”

However, while taking Andrew for a check-up, the doctors suspected that Brad was autistic.

“I refused and told them it couldn’t be possible.”

In a subsequent medical evaluation for Andrew, the doctors convinced Sylvia to do a test for Brad. At the time, he was four years old.

“The test confirmed that he had Attention Deficit Hyperactivity Disorder (ADHD).”

She found this difficult to accept. The news hit her hard.

“God and I were not the best of friends at the time. I wondered how He could be so cruel to one person.”

Too painful

It was not until January 2019 that Sylvia came to accept her third born son’s ADHD diagnosis. 

“Brad also started experiencing convulsions that were not febrile. During his school sports day, I watched all the children lined up and noted that he was extremely tall compared to the others. This hit me so hard as he was two years older. He had been retained in the same class since only one teacher was able to support him. He could not do what most children his age could.”

Sylvia recalls that one day, she attended a school sports day. She went to the side-lines of the sports ground. On spotting her, Brad just stopped and started calling for her to acknowledge his ability to participate.

“ADHD affects concentration and focus. That was another red flag.”

To make matters worse, she was navigating through a marriage separation that eventually culminated in divorce.

“I remember when Andrew was five years old. He had not started talking. We went to a restaurant, and while having lunch, he strayed off. I found him with a stranger who was trying to have a conversation with him as he stared back blankly. I had to say that he doesn’t speak to strangers because explaining his condition was too painful.

"There was also a time when he wanted to play on a trampoline. When he joined in, all the other children left. This was one of the most traumatising things I have watched in my life.”

She adds that during the tough early days of managing her sons’ conditions, many of those who knew her or heard about her children’s condition were shocked to the extent of saying it was a curse.

Others said that an evil spell had been cast on her babies and advised her to go for special prayers. 

“Amidst it all, there were a few who held my hand and encouraged me to stand strong,” she says. “In the end, I realised that I would lose it if I continued listening to negative vibes from people. Today, it hardly bothers me what people say. People talk and move on to the next topic.”

Apart from being a mother, a reigning beauty pageant winner, and an entrepreneur, Sylvia runs a foundation for children with special needs. The foundation is called Andy Speaks for Special Needs Africa.

“I started it in January 2019. I watched my children get discriminated against. I walked the journey and the challenges of being a special needs’ parent in a country where policies are just on paper and decided to do something about it.”

She adds that finding basic things like a proper school for children with special needs is tough; neurologists are a handful and very expensive to see, therapists, medicines and day to day care are unattainable for most parents.

“I am fortunate to have an understanding house help who takes good care of my children, even in my absence. Getting someone who understands some of these conditions is a near-impossible task.”

But she remembers the difficulty she had in getting a house help who could manage her kids. 

“My first nanny after the diagnosis used to leave them in front of the TV and sunbathe outside after house chores. I found this out by sheer luck one morning when I was unwell, and she assumed I had left for work. I have had nannies who come in and leave in three days or a week because they cannot keep up.” 

“The children have daily medication, and one nanny kept lying; she was administering them when she wasn’t. This caused Andrew to regress and have increased seizures.” 

She finally got a nanny who had nursed a special child in a previous job. 

“She was God-sent. She has an excellent relationship with my children. We have had her for three years now, and I can travel for up to a month and stay confident that my kids are in safe hands. She is like a second mom to them.”

Today, Sylvia says that her sons have made tremendous progress. 

“Andrew started walking late, but he eventually walked. At age five, he started talking. He can now sing and identify and name objects. I have now enrolled them in speech and occupational therapies to make life easier for them and to enhance their independence.” 

All along, she has kept going by the grace of God and the zeal to be there for her children. 

“I have made a commitment to give them the finest life possible. Each day I step out of the house, I long for their genuine love, purity, and uniqueness. I also dream of one day having a baby girl when I find the right man.”

As a mother to special needs children, Sylvia says she has learnt that it takes parental patience, zeal and persistence to offer emotional, motherly and financial support. 

“Acceptance is the first step, and taking self-care as you cannot give from an empty cup,” she says.  “I found my purpose of service to other special needs parents because of the experience I have had on this journey.” 

She hopes that one day there will be an end to stigma against special needs children. 

“Let’s focus on the ability and not the label. Love your child as they are as God never makes mistakes. He has His purpose for your child, and He will always give you sufficient grace.”

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