Stigma around birth defects continues to plague Africans
Cynthia Solomon, a 45-year-old businesswoman in Nigeria, started having problems in her marital home when she gave birth to two children with Down syndrome.
“I was devastated and heartbroken. I know I will live with the fact that there is no cure for Down syndrome, but what broke my heart was how my family members and people in my community treated us,” Solomon says. “At some point they stopped talking to me because I was called a witch.”
Approximately 295,000 newborn babies die each year within 28 days of birth worldwide due to birth defects or birth defects, the most common being Down syndrome, heart defects and neural tube defects. According to the WHO, around 94% of them occur in low- and middle-income countries.
Although 50% of birth defects have no known cause, problems such as genetic abnormalities, alcohol or tobacco use during pregnancy and insufficient access to nutritious food by pregnant women have been linked, according to the report. WHO.
But in low- and middle-income countries, myths and misconceptions about birth defects abound.
A birth defects (CD) study conducted in Ethiopia with 40 participants and published by PLOS ONE in November 2021 shows the extent of myths and misconceptions.
“The majority of respondents said that most of society believed that the causes of CM were punishment from God due to estrangement from God or sins committed by the parents or families of the affected children considered cursed and wrongdoers. by the community,” the study says. “Almost all participants said it was very difficult to raise a child with major CM. About half of their belief in CM was traditional and resulted from poor awareness.”
Impact of poor awareness
Such poor awareness also negatively impacts parents like Solomon and their children as they are stigmatized in their communities.
“I’m used to the way people treat me in public, but my 9- and 11-year-olds sometimes cry. I pray the world will one day accept them for who they are,” Solomon says.
Tola Makinde, Founder and Executive Director of Moyinoluwa Rainbow Foundation, a non-profit organization in Nigeria that supports families and children living with Down syndrome, says SciDev.Net that myths and misconceptions further compound the stigma and rejection experienced by parents raising children with CMs.
“Because of the stigma, many parents abandon their child, see it as a waste of time and resources, and sometimes wish the child would go away or die. them, calling their wives or their children by name”. Makinde explains.
But Ifeoluwa Odunyemi, a working mother in her late thirties, says SciDev.Net that her son with Down syndrome is well accepted by his nuclear family. “Society needs to understand that he is a child, like all other children, before looking at his disability,” she says.
“I also implore the government to have compassion for parents raising children with birth defects. They can do this by ensuring that they build more intervention centers so that our children can be integrated into society, and that drugs for MC children be subsidized.”
Makinde said she was depressed when she found out her daughter, Moyinoluwa, had Down syndrome.
“Five days after I gave birth to her, the doctors confirmed a diagnosis of Down’s syndrome. It was a brutal shock. I was in denial initially and didn’t want to believe it because I had prior knowledge about Down syndrome and its lifelong challenges. I thought about the reality, the pain, the sacrifices, the trauma and the ignorant society,” says Makinde. SciDev.Net.
Change the story
Makinde says that as an ambassador for Save Down Syndrome Inc, her goal is to minimize the stigma faced by children living with such disorders and to end the mistreatment and abuse of those affected in Africa.
As well as advocating for specialized health facilities and schools, Makinde says, “Building early intervention centers would also reduce stigma and denial while organizing capacity building programs for those affected, their families, health personnel and educators. Encourage them.”
She urges parents not to lock their children up with CMs because of the prejudices they face. “Instead, I encourage parents and caregivers to get them out and make sure they get the best care,” she adds.
Prevention, the next step
Moruf Abdulsalam, Consultant Pediatric Surgeon at Lagos State University Teaching Hospital Lagos, Nigeria, says the disproportionate burden of severe birth defects in low- and middle-income countries stems from several factors.
“[These] include higher birth rates in low- and middle-income countries, poor screening for birth defects, an abortion law that prevents women from aborting if a serious birth defect is detected, and a weekly health system for detect, manage and support families with birth defects among others,” says Abdulsalam.
He explains that high-income countries have restricted birth rates, while in low- and middle-income countries like Nigeria, there is no such law. Here, he says, the fertility rate is 5.32 births per woman, leading to a higher likelihood of birth defects.
Abdulsalam said CMs can be prevented when there are modifiable causes such as nutritional, occupational and environmental factors, adding that some causes are genetic and not modifiable.
“Furthermore, policy makers urgently need to strengthen the health system to be able to do genetic screening and improve surveillance. [and] early detection. Most importantly, there should be constant awareness of birth defects and expectant mothers should be educated about the modifiable and non-modifiable causes of birth defects.”
To help children with CD, the consultant says family and societal support is essential, adding that “policy makers should include the treatment of birth defects in the [health] insurance policy, to ease the burden of the family’s out-of-pocket expenses. Families can join NGOs that support and promote the treatment of these birth defects.”