As Nigeria joined the global community to mark World Down Syndrome Day on March 21, 2023, HealthWise examined the challenges of parenting children with this condition by speaking with parents and guardians of special‑needs children. SODIQ OJUROUNGBE reports that when Mrs. Rose Mordi gave birth to her daughter 28 years ago, she immediately suspected something was wrong. Drawing on her prior knowledge of Down syndrome, she recognized several signs in the newborn, Awele Mordi, and was the first to alert the medical staff. Before Awele’s birth, Mrs. Mordi had three healthy children, so she sat dejected on the hospital bed when she learned her new baby would live with Down syndrome. The prospect of stigma in a largely ignorant society weighed heavily on her, yet she soon reframed the diagnosis as a “blessing in disguise.” By confronting stigma head‑on, she forced the world to accept her child as she was. To create a supportive environment for children with Down syndrome—through education, potential development, and societal integration—Mrs. Mordi later founded the Down Syndrome Foundation of Nigeria.
While Mrs. Mordi embraced her fate, many parents of children with Down syndrome struggle with anguish, stigma, and trauma. They grapple with the financial and emotional costs of raising a child with special needs, and the joy of a newborn often fades once the diagnosis is confirmed. Parents interviewed by HealthWise reported battling stigmatization, financial hardship, and limited access to medical facilities.
Down syndrome is the most common chromosomal disorder and a leading cause of intellectual disability. It results primarily from trisomy 21, where an extra copy of chromosome 21 disrupts normal development, leading to systemic problems, lifelong impairments, developmental delays, and reduced life expectancy. In normal reproduction, each parent contributes 23 chromosomes, for a total of 46. In Down syndrome, a chromosome fails to separate properly, leaving the child with three copies of chromosome 21. The condition manifests in three forms: Trisomy 21, Mosaicism, and Translocation. According to the Centers for Disease Control and Prevention, mothers aged 35 and older face a higher risk, with risk increasing with age; a 2003 Columbia University study found fathers over 40 have twice the likelihood of having a child with Down syndrome. Neurologist Dr. Tayo Olatoye explained that prenatal screening can estimate risk, but there are no symptoms that alert a pregnant woman she is carrying a child with Down syndrome. Babies often display characteristic features at birth—flat facial profile, small head, short neck, protruding tongue, upward‑slanting eyes, atypical ears, and low muscle tone. Individuals with Down syndrome also face higher risks of congenital heart defects, hearing loss, vision problems, cataracts, leukemia, chronic constipation, sleep apnea, dementia, hypothyroidism, and obesity. The United Nations estimates the incidence at 1 in 1,000 to 1 in 1,100 live births worldwide, amounting to 3,000–5,000 children each year. Although a higher incidence among younger mothers has been noted, investigations into environmental factors causing non‑disjunction in this age group have been inconclusive.
Mr. Olaogun (a pseudonym) recounted his experience when his son Muyiwa (pseudonym) was born 28 years ago. The infant appeared healthy and handsome, making the condition difficult to detect. It was only after Muyiwa fell ill, lost weight, and failed to meet developmental milestones—such as sitting, crawling, and walking—that a diagnosis of Down syndrome was made seven years later. Mr. Olaogun attributed the delayed diagnosis to his limited knowledge of the disorder. The revelation was traumatic for the family, and they have since faced ongoing challenges, both financial and emotional, in caring for him. “We have been coping with the challenges foisted upon us since his birth, especially after his diagnosis at around seven,” he said. Initially, they enrolled him in a mainstream primary school, but his difficulties led them to withdraw him after he “passed out” from the program. They later found a special‑needs school, where he spent a few years before connecting with the Down Syndrome Foundation of Nigeria. “The Foundation has been of great help,” Mr. Olaogun noted, adding that the experience has been “traumatic, I must say, but we resolved to keep pushing.” Knowledge‑sharing with other parents and experts continues to encourage the family.
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