One woman’s mission to help her daughter and others

Although Babatunde Fashola, fondly called Baba, is 22 years old, he is less than 70cm (2ft 4in) tall.

He has cerebral palsy and needs lifelong care. He can neither speak nor walk, and is fed through a tube attached to his stomach.

He was abandoned by his parents as a baby, but 10 years ago he found a home at the Center for Cerebral Palsy in the Nigerian city of Lagos.

“Grandma weighs about 12 kg [26lb]. He is doing well,” said the founder of the institution, Nonye Nweke, when I visited him.

Ms Nweke and her staff are working around the clock to help him and other young people living with permanent brain damage.

Although there is no official data, cerebral palsy is believed to be one of the most common neurological disorders in Nigeria. In 2017 a professor of medicine at the University of Lagos said 700,000 people have the condition.

For many of those living with cerebral palsy in the country, their condition is caused by a common phenomenon among newborns – neonatal jaundice.

This is caused by a build-up of bilirubin, a yellow substance, in the blood, which means that babies’ skin has a yellow tint.

Professor Chinyere Ezeaka, a pediatrician at the University Teaching Hospital in Lagos, tells the BBC that more than 60% of all babies suffer from jaundice.

Most babies recover within a few days. More severe cases require further medical intervention – and even then the condition is easily treatable.

Children are mainly exposed to ultraviolet light to dissolve excess bilirubin in their red blood cells. The treatment lasts several days depending on the severity.

However, in Nigeria this treatment is often not immediately available, which is why the country is among the top five neurological disorders caused by untreated jaundice in the world, according to data from the World Health Organization (WHO).

Any treatment for neonatal jaundice “must occur within the first 10 days of life, otherwise [the condition] it can cause permanent brain damage and severe cerebral palsy,” says Prof. Ezeaka.

To make matters worse, the West African country lacks facilities to care for people with neurological disorders. There are only three cerebral palsy centers, all privately owned, in Nigeria, which has a population of more than 200 million.

Mrs Nweke, a single mother, founded the Cerebral Palsy Center after struggling to find support for her own daughter Zimuzo.

“When I took her to kindergarten [centre]they asked me to take her back because other mothers would withdraw their children. As a mother, I have to say it was quite devastating,” Ms Nweke told the BBC.

Zimuzo is now 17 and Ms Nweke’s Cerebral Palsy Center provides full-time support to others with similar experiences.

On the day of my visit, colorful rugs and toys were neatly arranged on the floor. Mickey Mouse and his friends are talking on the wide screen in the living room.

Twelve youngsters, some as young as five, watch TV, their bright surroundings momentarily ignored. All are motionless and do not speak.

At lunchtime, caregivers help the youth eat. Some take liquid food through tubes attached to their stomach.

Careful and slow, caregivers support their head with pillows and push the contents of your syringes into the tube.

The young are fed every two hours and need regular muscle massage to prevent stiffness.

But 12 of them have free care at the Center for Cerebral Palsy, which is funded exclusively by donors.

This institution has a long waiting list – Ms Nweke has received more than 100 applications.

But taking on more young people would require additional financial support. The cost of caring for someone at the center is at least $1,000 (£790) a month – a huge sum in a country where the national minimum wage is around $540 a year.

“As a mum, I have to say it’s quite devastating. You have moments of depression, it gives you heartache and it’s quite expensive – in fact it’s the most expensive congenital disorder to treat,” Ms Nweke says.

“And of course it keeps you away from people because you’re not talking about the same things. They’re talking about their babies, they’re walking, they’re enjoying those baby moments. You’re not doing that. You’re sad,” she adds.

Mrs Nweke explains that she adopted Zimuzo from an orphanage.

A few months after taking her new daughter home, Mrs Nweke realized that Zimuzo was not developing in the same way as the children around her. She was examined at the hospital and diagnosed with cerebral palsy.

Mrs Nweke was told that she could take Zimuza, then only a few months old, back to the orphanage and adopt another baby instead, but she refused.

“I decided to keep her and started researching what the disorder was, the treatment and the kind of care my child would need – she is my life.

“The doctors also told me that he would not live more than two years. So here we are – 17 years later,” says a smiling Mrs Nweke.

Lack of awareness and adequate medical support makes it difficult to diagnose and treat neonatal jaundice in Nigeria.

Ms Nweke also says that the common local belief that children with congenital disorders are spiritually damaged or bewitched leads to stigmatisation.

Some children with neurological disorders – mostly in rural Nigeria – are called witches. In some cases, they are abandoned in houses of worship or thrown out of their families.

Ms Nweke is not alone in her mission to dispel myths and improve care.

Project Oscar – a charity focused on improving the diagnosis and treatment of neonatal jaundice – recently launched in Lagos.

The project is named after Vietnam-born British disability advocate Oscar Anderson, whose untreated jaundice caused cerebral palsy.

“We are equipping primary, secondary and tertiary healthcare facilities with jaundice treatment equipment, primarily light boxes, but also detection and screening equipment,” Toyin Saraki, who oversaw the launch, told the BBC.

Project Oscar, supported by consumer protection company Reckitt, is training 300 health workers in Lagos. In the first year, we hope to reach 10,000 mothers, screen 9,000 children and introduce new protocols to try to prevent jaundiced babies from developing cerebral palsy.

In a country where the public health system is overstretched, the government has little to say about the disorder, although it has praised the aims of Project Oscar.

Treatment of neonatal jaundice is significantly cheaper than the cost of lifelong care, doctors say.

First launched in Vietnam in 2019, the Oscar project has helped around 150,000 children in that Asian country.

Mr Anderson, 22, says he wants to prevent other children from experiencing what he went through.

“People with disabilities should not be underestimated,” he tells the BBC.

It is working to ensure that every newborn is screened for neonatal jaundice and with the support and courage of mothers, midwives and medical workers to ensure better understanding and faster treatment.

However, achieving this is an extremely ambitious goal in Africa’s most populous country, where thousands of babies are born with neonatal jaundice each year.

Regardless, Mr. Anderson is determined to defy the odds.

“The work doesn’t stop until every baby is protected against neonatal jaundice,” he says.