A Mother's Fight Against Neonatal Jaundice Leading to Cerebral Palsy in Nigeria

In Nigeria, a lack of awareness and medical support leads to a high incidence of neonatal jaundice, often resulting in cerebral palsy. Joyce Nweke, who runs a care center for affected children, is on a mission to change the narrative around this condition and improve treatment access.

 

A determined mother in Nigeria is stepping up her fight against neonatal jaundice, a considerable contributor to the country's high rates of cerebral palsy. Joyce Nweke, founder of the Cerebral Palsy Centre in Lagos, is devoted to enhancing awareness and treatment access for this critical health issue, which affects countless infants and the families caring for them.

One poignant story is that of 22-year-old Babatunde Fashola, affectionately known as Baba. Babatunde stands at just 70cm (2ft 4in) tall due to severe cerebral palsy, resulting from untreated jaundice in his infancy. He has lived at the center for the last ten years after being abandoned as a baby. His caregiver, Nweke, lovingly explains, "Baba weighs about 12kg [26lb]. He is doing well," but emphasizes that many children like him face precarious situations.

Cerebral palsy has emerged as a common neurological disorder in Nigeria, where the World Health Organization estimates that over 700,000 people live with this condition due to complications from neonatal jaundice. This condition, characterized by a buildup of bilirubin, presents with a yellow tint to the skin and can lead to severe developmental issues if not treated promptly within the first ten days of life. Tragically, many infants in Nigeria suffer from untreated jaundice because the necessary medical interventions are not available or accessible.

"In Nigeria, we lack adequate medical infrastructure," says Professor Chinyere Ezeaka, a pediatrician at the Lagos University Teaching Hospital. As a result, Nigeria has one of the highest rates of neurological disorders caused by untreated jaundice, with facilities crafted only to address such needs remaining scarce.

Ms. Nweke's motivation to open the Cerebral Palsy Centre stemmed from her personal experiences while raising her adopted daughter, Zimuzo, who was diagnosed with the disorder at a young age. Facing significant challenges finding proper support for Zimuzo, who is now 17, Nweke decided to create a refuge for other families facing similar battles. Sadly, the center has a long waiting list of over 100 applications, as only twelve children currently receive free care.

In addition to the lack of resources, cultural beliefs surrounding disabilities add another layer of complexity. Many parents resort to stigmatization, believing their children to be spiritually cursed or bewitched. Consequently, some become abandoned or exiled due to outdated beliefs perpetuating their plight.

Supporting Ms. Nweke are grassroots initiatives like the Oscar Project, which aims to enhance diagnosis and treatment approaches for neonatal jaundice. With the support of health firm Reckitt, the Oscar Project is committed to equipping healthcare facilities with necessary treatment tools and screening processes, aspiring to reduce the incidence of severely affected babies.

However, the road ahead remains arduous in a country where the public health system is already overstretched. Collaboration between healthcare facilities, communities, and families is vital to raising awareness and combating this pressing issue.

As Joyce Nweke poignantly reflects, "The work doesn't stop until every baby is protected against neonatal jaundice." And with her undeniable strength and determination, she continues paving the way for change in Nigeria.