When cerebral palsy is not a death sentence

When Naomi Irumakwe gave birth to Eberechi (her third baby) at a private health centre in 2009 in Umuahia, Abia State, the child was all-normal. But one year later, Eberechi had a convulsion that affected her left hand and leg. It also affected her eyes.

 

At the Royal Cross, another hospital in Umuahia, where they spent two weeks trying to find a solution, the doctor could not say the problem, yet the girl was weak and could not walk at age two.

 

Friends and neighbours told her that Eberechi was an evil child and a punishment for the sins of her fathers. At five years in 2014, Eberechi still could not walk but crawl and stand with the outer edges of her foot.

 

“I bought her a chair [on which] she always sat quietly and did not play with other children,” Irumakwe recalled.

 

Finally, she brought her to the Federal Medical Center or FMC in Umuahia when the child clocked eight and still could not walk. At the physiotherapy section, doctors conducted an X-ray that confirmed that herdaughter had cerebral palsy or CP.

 

It isa congenital disorder that affects movement, muscle tone and posture due to abnormal brain development resulting from possible gene mutations, maternal and fetal stroke, bleeding into the brain in the womb or as a newborn, infant infections, traumatic head injury to an infant or lack of oxygen flow to the brain.

The burden of CP

While one to four per 1,000 live births results in cerebral palsy globally, two to 10 per 1,000 results in this neurological disorder in Africa.

In Nigeria, with 1.5 to 3 per 1000 live births, CP is the leading cause of childhood neuro disability, with affected children facing the added burden of stigmatisation, poverty, inadequate facilities for rehabilitative care and diminished educational opportunities.

 

The abnormal development of the brain or damage that leads to CP can happen before birth, during birth, within a month after delivery, or during the first years of a child’s life when the brain is still developing.

 

The cause of CP and its effect on function differ significantly. While some people with CP can walk, others need assistance. Some have intellectual disabilities; others do not. People with CP can also have problems swallowing and commonly have an eye-muscle imbalance – the eyes do not focus on the same object.

 

There is no cure for the lifelong disorder, but treatments can help improve function. 

Finding help

 

At FMC Umuahia, Irumakwe was referred to Dr Peace Amaraegbulam, an orthopaedic surgeon, who recommended surgery for Irumakwe’s daughter.

 

Amaraegbulam doubles as the founder of the Straight Child Foundation or TSCF, a local nonprofit that handles CP cases at the FMC Umuahia.

 

Even though Irumakwe could only afford less than 20% of the surgery cost, which could be as high as N150,000, Amaraegbulam went on to operate on the girl. 

 

Her foundation also gave Eberechi a free CP chair to enable her seat properly and encouraged her never to give up on her child but to treat her as special.

 

“Since then, there have been a lot of changes after the operation,” Irumakwe said. “Now, she can stamp her feet on the ground and walk, wear her clothes and eat food. She can also say certain words, which she could not do before.”

 

Inspired to action

The idea behind The Straight Child Foundation was born in 2015 while Amaraegbulam was away in Denmark for the AARHUS University Spine fellowship. There, she saw and loved the quality of care given to CP patients and their parents.

 

“Parents who had children with the disorder did not hold them back, they had state-of-the-art facilities that made it easy to take care of the patients, and I tried to compare it with what we have in Nigeria, where parents prefer to hide their children who have CP,” she said. 

 

“I thought of what I could do to replicate the standard in Nigeria, even though it might not be up to that level”.

 

In November 2017, Amaraegbulam launched the foundation, which she says is orthopaedic – all about “making the child straight”.

 

“Some of those that came during the inauguration volunteered to be part of the organisation, “she said.

 

Besides CP, TSCF caters to children with clubfoot, a foot deformity that twists the ankle inward and causes the foot to turn downward, making walking difficult and painful.

 

TSCF works with MiracleFeet, a US-based nonprofit supporting local clinics to give free and quality clubfoot treatment in low- and middle-income countries using the Ponseti Mothed, a non-surgical but effective treatment approach. 

 

“From seeing three to four [clubfoot] patients in the first year, we went up to see over 100 children with the deformity who received care at no cost to their parents,” she said. “MiracleFeet provided the casting materials, foot adoption braces used for maintaining correction and stipends to parents.”

 

The MiracleFeet-TSCF partnership has resulted in the establishment of 11 local clinics that have treated 1600 clubfoot cases since 2018 in a country where over 11 000 kids are born every year with the deformity that significantly causes disability.

 

Back to CP, TSCF has supported about 35 children who also receive physiotherapy care and speech therapy. It has also distributed 20 wheelchairs for CP.

 

“The CP chairs have some support to enable children to sit on their own; it is padded.The wheelchairs enable the children to move around better,” Amaraegbulam said.

 

“We also offer orthosis, an individually customised device, which is applied to the external part of the body to provide support and protection for that particular area of the body.”

 

The non-governmental organisation organises boot camps every August where CP patients come together to interact with healthcare workers on managing their condition and with fellow CP patients.

 

Plethora of challenges

 

Most of the foundation’s activities for CP are self-funded by Amaraegbulam, friends, family, and volunteers, which limits how many kids it can help per time.

 

“For instance, Osinachi (a child) requires over N700,000 for hydrocephalus surgery. Other children who have different CP-related conditions require funds for treatment. But the foundation cannot afford that,” Amaraegbulam said.

 

Lack of funds also means the foundation lacks the mobility to get into rural communities and create awareness about CP and the need for parents to present their children for care.

 

“Because we don’t have our own mobility, we are always subject to commercial vehicles, which make it difficult to get into interior communities; we don’t go as much as we want to,” Amaraegbulam said.

 

And Ignorance among parents who only bring their children when they are already beyond two years does not help.

 

“At that age, you have lost significant chances of playing around with the brain to make it work better,” Amaraebulam admitted. “When a child has certain CP indicators like severe jaundice in developed climes, he/she is already marked as someone who should be evaluated further for CP, and then, early intervention services are provided.”

 

Thankfully, some parents whose kids had received care through TSCF now join in spreading the word about CP.

 

“If parents look at these children as special, that will help them seek care for the children because CP is not a death sentence,” said Irumakwe, who now encourages other parents with CP-carrying kids to seek care.

 

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.