MY STORY: My son finally called me ‘Mum’

Sylvia Moraa tells Simon Mburu all about the challenges and joys of raising a child on the autism spectrum.

“I am Sylvia Moraa, a mother of three boys. My second born is Andrew Muia, who is eight years and four months old. Since his birth in August 2010, each day with him has been a miracle. It all started in the last weeks of my pregnancy.

“My pregnancy had been smooth all along until week 34 when my water drained. At the time, I was solely handling paperwork designs for the TPS Serena Rights Issue. I was admitted at the Family Care Hospital in Nairobi, where a scan revealed that my amniotic fluid levels had reduced. They decided to wait for three days to see if the levels would increase. They did not.

“I was given an injection to strengthen the baby’s lungs so that the doctors could induce labour. The first induction barely got me 2cm dilated. I was given another shot without much success. I only got mild labour and no change in dilation. The third induction had me getting labour in reverse. The pain intensity was reversed, and the doctors decided to wait no more. At 36 weeks, I underwent an emergency caesarean section (CS).

“I had palpitations and dizziness when I woke up following the CS. I was immediately sedated again. When I woke up again, I was informed that my baby had been incubated. But I insisted on seeing him. When the doctors attempted to bring him out, he started turning purple and they immediately put him back in the incubator. This was just one of the many signs that would come to show that all was not well.

“A month later, my baby developed jaundice. He also started struggling to pass stool. We saw a gastroenterologist who diagnosed him with lactose intolerance and reflux. The doctor also noted that Andrew’s reflex was too high. Two months later, my dad noticed that his neck wasn’t as strong and steady as it was supposed to be. I also remember that at one point, I asked the doctor why Andrew kept shivering even when he was warmly dressed. He brushed it off and said that it was a habit that could soon end. But it did not. Instead, at seven months, he got a full-blown convulsion.

“The effects of the convulsion reversed all the development progress he had made since birth. He forgot everything including bubbling sounds. Watching my little baby go through all this was the toughest thing I had ever done. Depression crept up on me. “We went to the Aga Khan Hospital where we were referred to a paediatric neurologist called Dr. Oyatsi who recommended blood tests, an MRI scan, and an EEG. He also started my son on basic convulsion medicine. The tests revealed that my son had a sclerosis in his head and high electric activities in the brain.

DIAGNOSIS

“The final diagnosis of my son’s condition was not easy on my relationships as well. On one hand, there was the investigation by doctors who were trying to figure out if there was a genetic part of the disease that I had contributed. This created a lot of tensions. It was harder too as he grew and failed to meet development milestones. Some people asked hurtful questions. Others gave me bad looks.

"I remember when Andrew was five. He hadn’t started talking. He strayed at a restaurant. 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 went in, all the other kids left. Seeing him alone, confused and stranded was too heart wrenching.

“During those tough early days, many of those who knew me or heard about my child’s condition were shocked. Some said it was a curse. Others advised me to go for special prayers against the spell that had been cast on my son. But there were also others who held my hand and urged me to stand strong. I quit my job to start a business which would allow me time to be with Andrew.

“At first, Andrew was diagnosed with general autism. Later, his condition was termed as a convulsive disorder. Earlier this year, his condition was set as Lennox Gastaut Syndrome, a condition on the broader autistic spectrum.

“All along, I kept hoping that Andrew would one day call me mum. It happened sometime after he turned five. He started walking very late as well, but he eventually did. I have had him start speech and occupational therapies. Today, he can say his name and identify items. He is also trying to sing, something that he really loves. I have also noticed that he is very gifted in memorising songs.

“Looking back, one of my most depressing moments was finding out that I was pregnant with my third child on the day that my son was diagnosed with autism. I was depressed and afraid. I felt incapable of birthing another child after the diagnosis. But I have since overcome this fear. Today, I still pray and hope to have a baby girl one day if I ever get remarried.

“There are moments when handling this as a single parent feels overwhelming and unfair, especially because I have two other children who still need me. I pray for strength all the time. To keep my head above the water, I normally take time out, meet with my friends, and travel to re-energise.

“Over and above, I keep hoping that we can all accept that persons with special needs are a part of us. Their being different does not change the fact that they need love, care, acceptance, and a bit more inclusion in the society.”