Caring for kids with spina bifida can be difficult, but Nigerian parents are learning new ways of doing it

LAGOS: For giving birth to a child with a hunchback and enlarged head in June 2014, she had brought a curse and bad luck on them, Eniola Adebayo’s husband’s family told her.

And that was just days after she regained consciousness from a three-day coma she went into almost immediately after a cesarean section at a private hospital in Lagos.

“It was a very tough period for me, and I was confused about what to do. I had no one to turn to, and even my husband began to ignore me,” the 40-year-old said.

Later at the Lagos University Teaching Hospital or LUTH, where she had taken Erioluwa, the newborn, for examination, the girl was diagnosed with two disturbing conditions: severe spina bifida and hydrocephalus.

Spina bifida is a birth defect occurring when the spinal cord fails to develop properly due to environmental, genetic, and nutritional factors like the shortage of folic acid (Vitamin B9) in a pregnant woman’s body. It leads to a protruding back that could result in a permanent disability and other health complications that place the affected person in lifelong need of support.

And hydrocephalus is the accumulation of water (cerebrospinal fluid) in the brain’s chambers due to a difference between the quantity of fluid produced by body tissues and the amount the bloodstream absorbs. The buildup of fluids brings pressure on the brain and enlarges the head.

Most people with spina bifida have hydrocephalus. According to a May 2022 report published in The Lancet journal, spina bifida affects between 214 000–322 000 prenancies every year globally, which is about 20 cases per 10 000 births.

The report says the burden is as high as one in every 100 pregnancies in low and middle-income countries. In Nigeria, for example, spina bifida is present in 72.7% of all defects affecting the brain and spinal cord, says a 2016 study published in the Saudi Journal of Health Science titled “The prevalence of neural tube defects in North-West Nigeria.”

Failed surgeries

To help Erioluwa, a procedure called endoscopic third ventriculostomy (ETV) that creates a bypass for the fluid was carried out on her at a private hospital because days before the operation initially billed to take place at LUTH, public healthcare doctors in Lagos State went on strike.

But three months after the operation, her head began to enlarge again, indicating a failed surgery. By this time, doctors had called off their strike, so she was taken back to LUTH, where she had another ETV. That did not work either, as the head began to enlarge yet again after a few months.

Adebayo was a salesperson at a supermarket in Lagos, while her husband worked as a teacher at a private secondary school. Her baby’s condition later forced her to quit her job and devote more time to caring for her.

Soon, the back-and-forth medical process drained Adebayo’s and her husband’s resources. And when doctors at LUTH recommended a different procedure called shunting (using a small tube to direct the fluid to another body part for reabsorption), the parents could not afford the cost (between N150,00 and N350,000).

Most people with spina bifida and hydrocephalus have no control over their bowel movements. That is because their brain and bowels do not communicate properly, meaning they could uncontrollably urinate in public at any time. Some wear diapers even when they are way beyond the age of wearing them.

This was the case with Erioluwa, who could not start schooling even at age five because all the schools they sought admission into rejected her because of her condition that was so obvious due to the failure to carry out the shunting.

Helping suffering kids

Help came for the little girl in mid-2019 when Adebayo heard from a friend about a foundation in Lagos supporting children with her daughter’s conditions and invited her to attend their meeting at LUTH.

While still wondering why the doctors who treated her baby never mentioned the existence of such a group at LUTH, Adebayo attended the workshop where she saw several other children battling spina bifida and hydrocephalus and realised Erioluwa was not alone.

At the event, Afolabi Fajemilo – founder of the Festus Fajemilo Foundation or FFF, taught Adebayo and other parents how best to cater to children with spina bifida and hydrocephalus and encouraged them to love and accept their children.

In 2021, the foundation offered to sponsor Erioluwa’s shunting procedure at LUTH, which went successfully.

Fajemilo decided to start FFF in 2006 after a bitter personal experience. Two years before, his wife had given birth to their son, Festus, who had spina bifida and hydrocephalus. They initially lacked knowledge of the conditions and so delayed 14 months before taking Festus for surgery.

“In the long run, my wife and I realised that if we had the right information, we would have averted some delayed development milestones by giving him the right treatment on time. We decided that we would make sure other parents have access to the right information,” Fajemilo said.

They named the foundation after Festus. Today, they advocate for children with spina bifida in Nigeria. They use social media posts, radio and television shows, public lectures, road walks, and workshops to fight myths and misconceptions surrounding the conditions.

Its annual campaign tagged “Go-Folic” educates women of childbearing age on the need to regularly take folic acid or foods rich in folate (a nutrient that helps in red blood cell development) to prevent giving birth to kids with spina bifida. FFF has reached about 10,000 women in Osun and Lagos states with its messages.

To help parents manage their children’s possible release of urine in public, once a year, FFF conducts training for parents on clean intermittent catheterisation, which involves inserting a flexible tube (catheter) into the bladder to collect urine into a drainage bag.

“It is usually embarrassing for parents to see their teenage children pass waste in public. That is why this training is organised to increase their confidence management ability,” Fajemilo said.

In 2008, the foundation created two support groups in Lagos and Osun for parents of children with the conditions to discuss their challenges and share ideas. The two groups have 60 families. The Lagos group meets every third Saturday of February, April, June, August, and October at LUTH. The Osun group meets every first Monday of March, June, September, and December at the Obafemi Awolowo Teaching Hospital, Osun.

“Before I came to the [support group], [I] also believed my son’s condition was a spiritual one,” said Lagos-based 38-year-old Omalara Alaba. “But when I saw other parents and families at the foundation and heard their stories during the meetings, I felt encouraged.”

For families that cannot afford the cost of treatment and surgeries, the foundation gives them partial or complete financial support. About 103 children have benefitted from this. 

With its nine-man volunteers, the nonprofit networks locally and internationally to raise funds, including from organisations like the Daughters of Charity Nigeria, Hydrocephalus Association, SHINE International, and Liliane Fonds.

But some parents’ cultural and spiritual beliefs about spina bifida and hydrocephalus sometimes make the foundation’s work difficult. Some parents withdraw their participation from FFF’s programmes and take their suffering kids to spiritual houses instead, believing the conditions are spiritual and beyond medical help.

Meanwhile, Erioluwa’s condition has significantly improved. Her head size has reduced since the shunting procedure last year. Now in basic two at school, she loves singing and dancing.

“I am watching her do the things I didn’t think she would be able to do, and it gives me joy. I now encourage other mothers whose children have spina bifida and hydrocephalus,” her mother said.
This story was produced with the support of Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organisation dedicated to rigorous and compelling reporting about responses to social problems.