J., 10, lives with cerebral palsy and requires round-the-clock care.
Summary
- Families describe raising children with severe disabilities with little to no support, amid stigma that claims their children are cursed.
- A pediatric neurologist says nine in every ten cerebral palsy cases seen at JFK Hospital result from oxygen deprivation during labor — largely preventable when birth occurs in a medical facility.
- The National Commission on Disabilities estimates roughly one million Liberians live with disabilities, but it only has funds to help 5,000 people.
- An American missionary family with their only special needs child has inspired a peer support group that shares lifechanging knowledge and hope.
By Tetee Gebro, gender and health correspondent with New Narratives
MOUNT BARCLAY, Montserrado County — Victoria remembers the moment when her joy at delivering a baby girl turned to fear. The baby came early, at Victoria’s home. She did not cry. The midwife turned her upside down, trying everything to get a sound out of her.
The girl is now ten. She cannot walk. She cannot talk. She cannot feed herself and requires 24/7 care. FrontPage Africa is withholding the family’s last names to protect them from stigma. Stigma is something these families know well. People in Victoria’s community told her that her daughter was a dragon.
For a time Victoria believed them. Even pastors told her a snake had been sent on her daughter. She tried fasting, praying, spiritual interventions — all of it.
“Many days, I used to cry over her,” Victoria said. “When you see someone who gave birth at the same time as you and that person’s child is walking around, and your own child is just sitting, it brings tears. It can really hurt.”
What Victoria now knows is that her daughter is not cursed. She has a condition – cerebral palsy – likely caused during birth. She has a set of things a caregiver can do to help. She now knows that her daughter is one of an estimated one million Liberians living with a range of medical disabilities that can happen to anyone. Noone records how many are born with these conditions in Liberia but global rates suggest it is likely more than 1000 children are born in Liberia each year with severe disabilities.
Life for these families is upended. With no external support carers are often forced to quit jobs; they’re abandoned by spouses and given none of the training that could improve the child’s life. Severe stigma can leave families isolated. Some children are abandoned.
Disabilities in general receive little attention in Liberia’s extremely cash strapped public health system. According to the National Commission on Disabilities, the sole government program for disabilities is a pilot program that aims to reach just 5,000 people over five years — with financial assistance earmarked for just 20 school-age children in its first year.
A family upended in an instant, then a lifetime of struggle
Cerebral palsy has left Victoria’s daughter’s muscles stiff and tight. She has tremors and involuntary jerking of her hands and feet. For a time, Victoria wrapped her daughter’s curving foot in bandages trying to fix it. Nobody told her the curving was not in the foot at all — it was a nerve problem rooted in the brain that could be treated by stretching and strengthening exercises, surgery or medications.
Victoria is on her own providing care for her daughter. Her father has never accepted his daughter’s condition. When he visits he does not play with her. Victoria had to abandon her training to be a nurse. She carries the girl to the bathroom, bathes her, feeds and dresses her — work made physically harder now Victoria is pregnant again, with a new husband.
Tragically most cerebral palsy in Liberia can be prevented when the birth takes place in a hospital. Dr. Charles Oguni has run JFK Hospital’s pediatric neurology clinic long enough to know how most of these stories begin. A mother goes into labor. The labor is long. The facility where she is delivering does not recognize the danger — or recognizes it and sends her home anyway.
“’Go home,’ they tell her. ‘It is not your time.’ She comes back the next day. ‘Go home. It is not your time.’”
By the third day, the placenta — the organ through which oxygen and nutrients pass from mother to child — has begun to separate. Blood supplying oxygen to the baby’s brain is reduced. The brain begins to sustain damage. By the time the baby is born, the first thing anyone notices is that it does not cry. Nine in every ten cerebral palsy cases Dr. Oguni sees at JFK trace back to this moment.
Last month alone, 77 babies were brought to JFK’s emergency room showing signs of oxygen deprivation, he said. Of the fifteen admitted, six died. Four in every ten babies who arrive at JFK with oxygen deprivation do not survive. The ones who do are often left with cerebral palsy.
“When I was a student in obstetrics. I was told that the sun should not sit twice on a woman in labor,” Dr. Oguni said. “But you hear some mothers telling you they labored for two days, three days. Why would a facility keep them for that long before sending them to JFK? It is so improper.”
He described a patient he saw two days before this interview. A mother had labored at home for twenty-four hours. She then went to a facility and labored for another full day before being referred to JFK — by which time the damage was done.
“For quite some hours, I feel this depression deep within me. Because these conditions could have been prevented,” Dr. Oguni said. “The way to manage cerebral palsy is not to have it.”
Other conditions that limit children’s development are impossible to avoid. Down syndrome is is a genetic condition —present in the child’s chromosomes from the moment of conception. Children with Down syndrome may have intellectual disabilities, heart problems, and thyroid issues, but many can learn, attend school, and live fulfilling lives with the right support. Severe autism is another disorder. It is not well understood but genetics are the strongest known factor. It can cause difficulties with communication, social interaction, and behavior, often alongside intellectual disability, minimal or no verbal language, and a need for, round-the-clock support.
What all conditions share in Liberia is this: families receive a diagnosis if they can make it JFK. JFK does what it can to support them. But financial constraints mean that help is limited.
Dr. Oguni said JFK explains diagnoses to every parent. The hospital has a rehabilitation center offering physiotherapy and speech therapy, free of charge for children under 14. It has an endocrinology clinic for Down syndrome cases up to 16 years.
But the medications needed to manage the disorders are a different story: muscle relaxants, nerve-stimulating drugs that can help reactivate damaged brain pathways; medications that must be taken every day for their lifetimes but must be bought from abroad — because families could not afford them and suppliers stopped importing them.
Liberia has no pediatric cardiac surgeon, meaning Down syndrome children who need heart surgery must seek care outside the country. The country has only one pediatric endocrinologist for the entire population. The neurology clinic sees more than 200 cerebral palsy cases every month — about one third of them new patients, some coming for the first time after years of managing alone because no one ever directed them to the clinic.
And when families stop coming — worn down by transport costs, by years of watching a child whose condition is not visibly improving — said they simply disappear.”They tell me they cannot come back because they are just spending money on transport and their child’s condition is not changing,” Dr. Oguni said. “You will not blame them.”
Janet with her 5-year-old son who cannot walk or talk, with cerebral palsy
Janet and her husband did not even know there was anything wrong with their son until he was two years old. It took an aunt to flag that the child still could not sit, could not speak and that something was seriously wrong. JFK eventually diagnosed the child with cerebral palsy, a condition so foreign to Janet that she does not remember the name to this day.
Luckily for Janet and her son, the father has stayed. The boy, now 5, requires constant support. But the family’s lack of knowledge about the condition has had profound impacts. Jason’s father questioned whether the condition had come from Janet’s side of the family, causing problems in their marriage. (Cerebral palsy is not genetic). Janet has avoided having another child.
“I got scared. Even now when people ask me if I will have another child, I say no. What if I go back and see the same thing again?”
Doctors say because the condition is caused by injury or pregnancy complications, a second child is no more likely to have it than any other child.
A failing healthcare system leaves families with few choices
In more developed countries these families have extensive support. In Rwanda, which is leading healthcare system reform on the continent, families have expanding national support and community-based programs. Public schools are training teachers in inclusive education, allowing children with learning and physical disabilities to study alongside their peers. Specialized centers offer tailored education plans, speech and physical therapy, and counseling to help parents navigate daily challenges. While resource challenges remain, experts say Rwanda’s model demonstrates how targeted investment and community health networks can help remove social stigma and give every child a chance to succeed.
In Liberia, outside of JFK, the government provides nothing. Mohamed Saka, program manager for the Disabilities Commission said the organization received just US$210,000 from government this fiscal year—up from US$200,000 the year before—but estimated it would need at least US$5 million to address even half of the country’s disability-related needs. He said the Commission does not currently have the technical capacity to provide services for children with conditions such as cerebral palsy and Down syndrome and is seeking partnerships with organizations with that experience.
FrontPage Africa/New Narratives contacted XX, the spokesman for the Ministry of Education, with questions about government support for families of children with complex needs. He did not respond before publication.
An American Missionary Family Shares Knowledge and Hope
An American missionary family with their own experience of cerebral palsy is doing their best to help. Amanda Brook and her husband had worked in the country since 2017. After their youngest daughter suffered a severe brain injury during birth in a US hospital, causing cerebral palsy, they fought to help improve her quality of life. As soon as she was healthy enough, they returned, determined to find a way to do the work they loved while raising a special needs child.
Soon they met Felecia Gibson who was raising a grandson with disabilities. Brook and Gibson spent hours sharing their experiences. Word quickly spread through the community that there was “a white baby like ours,” and families began arriving at Brooks’ home.
Those informal conversations grew into “King’s Kids”, a support group that brings together caregivers for practical training, emotional support and fellowship. Brooks said she chose the name because she wanted families to hear a different message from the one many had grown up with: that their children were not witches, dragons or cursed, but children created in the image of God and worthy of love and dignity.
King’s Kids teaches mothers how to position their children to avoid pressure sores. It shows them feeding techniques for children who have difficulty swallowing, and exercises that can help maintain muscle function and improve comfort. It creates a space where mothers who have been told their children are dragons and witches and snakes can sit together and say — my child is not cursed. My child is here. My child is loved.
The group has been life-changing for families. For many, the first King’s Kids session was the first time anyone had ever explained their child’s condition to them at all.
“I did not know the name,” said Felecia Gibson. “I did not know what caused it. I did not know what I could do. When they told me, I cried. Not because it was bad news. Because finally someone was telling me something true.”
Janet recalled a Bible passage read at a King’s Kids meeting — about a blind man whose disciples asked whether his condition was punishment for sin.
“Jesus said no,” Janet said. “It happened that God’s glory would be shown. From that day, I came home and I read that passage over and over again. And God encouraged me.”
She posts her son’s photographs on social media now. The couple takes him outside. They tell him they love him every day. “Before I used to look at him like I was being cursed. Now I feel like God has blessed me.”
And they have been inspired. Victoria’s mother-in-law founded her own informal school in a church building — currently capped at fourth grade — specifically so her granddaughter would have somewhere to go.
“She is not a witch,” Victoria said. “She never was. She is my child. And she deserves to be here.”
This story was produced in collaboration with New Narratives as part of the Investigating Liberia project. Funding was provided by a private donor and the Swedish International Development Cooperation Agency. The donors had no say in the story’s content.
