One woman’s mission to help her daughter and others

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

He has a brain disease and needs lifelong care. He cannot speak or walk and is fed through a tube attached to his stomach.

When he was a baby, his parents abandoned him but 10 years ago, he found a home at the Cerebral Palsy Center in Lagos, Nigeria.

“Dad weighs about 12kg [26lb]. They are doing well,” the founder of the place, Nonye Nweke, tells me when I visit.

Ms. Nweke and her staff work day and night to help her and other young people with brain damage.

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

For many of the country’s neurodegenerative disorders, their problems began as a result of what happens among newborns – neonatal jaundice.

This is caused by an increase in bilirubin, a yellow substance, in the blood, which means that children’s skin has a yellowish tint.

Professor Chinyere Ezeaka, a pediatrician at the Lagos University Teaching Hospital, told the BBC that more than 60 percent of children suffer from jaundice.

Most children recover within a few days. The most severe cases require medical attention – and even then the disease can be easily treated.

Children are exposed to ultra-violet light to dissolve excess bilirubin in their red blood cells. The treatment lasts for several days depending on the severity.

However, in Nigeria this treatment is often not immediately available, which is why the country is one of the five people with neurological diseases caused by chronic jaundice in the world, according to a study by the World Health Organization (WHO).

Any treatment for neonatal jaundice “should be done within the first 10 days of life, perhaps [the condition] It can cause permanent brain damage and brain damage,” says Prof Ezeaka.

To make matters worse, the West African country has no facilities to care for people with neurological problems. There are only three privately run cerebral palsy centers in Nigeria, home to over 200 million people.

Mrs Nweke – a single mother – established the Cerebral Palsy Center after struggling to find treatment for her daughter, Zimuzo.

“When I took him to childcare [centre]she asked me to return it to her because some mothers take their children away. As a mother, I have to say it was very painful,” Ms Nweke told the BBC.

Zimuzo is now 17 years old, and Mrs Nweke’s Cerebral Palsy Center provides regular support to others with the same condition.

On the day I visit, play mats and cute toys are neatly arranged on the floor. Mickey Mouse and his friends chat on the television in the living room.

12 young people, some as young as five years old, watching TV, their bright spots were not ignored for a while. They are both motionless and speechless.

At lunchtime, the caregivers help the children eat. Others drink liquid food through tubes attached to their stomachs.

Carefully and slowly, caregivers support their heads with pillows and push the contents of the syringes into the tubes.

Youngsters are fed every two hours and require regular massage to prevent dryness.

But only 12 lucky ones are receiving free treatment from the Cerebral Palsy Center, which is funded solely by donors.

The place has a long waiting list – Ms Nweke has received over 100 applications.

But taking on more young people may require more financial support. The cost of maintaining someone at the center is at least $1,000 (£790) a month – a lot of money in a country where the national minimum wage is around $540 a year.

“As a mother, I have to say it’s very difficult. You have a stressful time, it’s heartbreaking and it’s very expensive – especially with congenital diseases which are very expensive,” says Mrs Nweke.

“And of course, it prevents you from being away from people because you don’t talk about the same things. They talk about their babies, walking, enjoying the time of the child. You don’t do that. You are sad,” he adds.

Mrs. Nweke explains that she took Zimuzo to the orphanage.

A few months after taking her daughter home, Mrs. Nweke realized that Zimuzo was not growing as her children used to. He was examined at the hospital and diagnosed with brain disease.

Mrs. Nweke was told that she could take Zimuzo, who was a few months old at the time, back to the orphanage to adopt another child, but she refused.

“I decided to keep him and I started researching the disease, the treatment and care my son would need – that’s my life.

“I was also told by the doctors that he will not live more than two years. Well here we are – 17 years later,” says Mrs. Nweke with a smile.

Lack of awareness and inadequate medical care hinders the diagnosis and treatment of neonatal jaundice in Nigeria.

Mrs. Nweke also said that many people in the area believe that children with congenital diseases are spiritually damaged or bewitched, which causes discrimination.

Some children with neurological problems – especially in rural areas of Nigeria – are called witches. In some cases, they are left in the synagogues or kicked out from their families.

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

The Oscar Project – an aid aimed at controlling neonatal jaundice – started operations in Lagos recently.

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

“We are equipping clinics in primary, secondary and tertiary schools with equipment to treat jaundice, especially light boxes, as well as diagnostic and diagnostic equipment,” Mr Toyin Saraki, who is in charge of the installation, told the BBC.

Project Oscar, supported by consumer healthcare company Reckitt, is training 300 health workers in Lagos. The hope in the first year is to reach 10,000 mothers, screen 9,000 children and introduce new methods to try to prevent children with jaundice from developing brain diseases.

In a country where public health services are on the rise, the government does not say much about the problem, although it has praised the goals of the Oscar project.

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

Project Oscar, which was first launched in Vietnam in 2019, has helped nearly 150,000 children in the Asian country.

Anderson, 22, says she wants to prevent other children from going through what she went through.

“People with disabilities should not be ignored,” he told the BBC.

They are working to ensure that every newborn is diagnosed with jaundice, and, with the help of the courage of mothers, midwives and medical professionals, to ensure that there is better understanding and faster treatment.

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

Regardless, Anderson is determined to defy the odds.

“This work will not stop until every child is protected from neonatal jaundice,” he says.