As Nigeria joined the global community to mark the 2023 World Down syndrome Day scheduled for March 21, PUNCH HealthWise, in this report, examines the difficulties of parenting children with this health condition by speaking with parents and guardians of special needs children. SODIQ OJUROUNGBE reports
When Mrs. Rose Mordi gave birth to her daughter 28 years ago, she immediately suspected something was wrong with the baby girl.
Based on her prior knowledge of Down syndrome, she instantly recognise some of the signs of the health condition in her newborn.
According to Mrs. Mordi, she was the first to alert the medical staff, including the doctors and nurses, to the health problems in her newborn named Awele Mordi.
Before Awele’s birth, Mrs. Mordi had given birth to three children who did not have any medical complications. Mordi sat at the hospital bed looking dejected as she discovered that her lovely newborn girl would have to live with Down syndrome.
Mrs. Mordi felt even worse as she thought about the reality of living with the health condition in the country and the trauma of stigmatisation the child and the family would have to face from the largely ignorant society.
She was, however, quick to pick herself up and see the condition as a blessing in disguise. Mrs. Mordi said she had been able to battle the stigmatisation attached to the condition by giving the world no choice but to accept her child the way she was created.
To provide a supportive environment for kids with the condition by educating them, utilising their potential, and integrating them into society, Mrs. Mordi later founded the Down Syndrome Foundation of Nigeria.
However, while Mrs. Mordi was quick to accept her fate and see her daughter as a blessing rather than a burden, many parents of children who have Down syndrome have not been able to get through the anguish, stigma, and trauma. Many of them are troubled by the burden of dealing with both the financial and emotional costs of raising a child with special needs.
The joy that comes with the birth of a new baby is often not experienced in many homes once it is confirmed that the newborn has Down syndrome. It is usually a difficult diagnosis to deal with for many parents. Some of these parents who spoke with PUNCH Healthwise said they have had to battle stigmatization, financial challenges, and access to medical facilities.
Down syndrome as a chromosomal disorder
According to experts, the most prevalent chromosomal issue in people and the most well-known cause of intellectual disability is Down syndrome.
Trisomy of chromosome 21 is the main contributor to the syndrome, which results in several systemic problems. Lifelong impairments and developmental delays are caused by the disorder, which significantly reduces life expectancy, experts say.
Health experts explained further that in all cases of reproduction, both parents pass their genes on to their children. These genes are carried in chromosomes. When the baby’s cells develop, each cell is supposed to receive 23 pairs of chromosomes, for 46 chromosomes total. Half of the chromosomes are from the mother, and half are from the father.
However, in children with Down syndrome, one of the chromosomes doesn’t separate properly. The baby ends up with three copies, or an extra partial copy, of chromosome 21, instead of two. This extra chromosome causes problems as the brain and physical features develop.
There are three types of Down syndrome known as Trisomy 21, Mosaicism, and Translocation, experts say.
According to the Centers for Disease and Prevention, mothers aged 35 and older are more at risk of having a baby with Down syndrome than younger mothers. The probability increases the older the mother is, CDC says.
Similarly, a 2003 study published by Columbia University Irving Medical centre found that fathers over 40 had twice the chance of having a child with Down syndrome.
However, speaking with PUNCH HealthWise, a neurologist, Dr. Tayo Olatoye said prenatal screening can predict the likelihood of delivering a baby with Down syndrome, stressing that there won’t be any symptoms to alert anyone carrying a child with Down syndrome.
He explained that babies with Down syndrome typically have a few distinguishing characteristics from birth, such as flat facial features, a small head, a short neck, a projecting tongue, eyes that slant upward, strangely shaped ears, and low muscle tone.
He added that people with Down syndrome are at higher risk of health conditions which include; congenital heart defects, hearing loss, poor vision, cataracts, leukemia, chronic constipation, sleep apnea, dementia, hypothyroidism, and obesity.
According to the United Nations, the estimated incidence of Down syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Each year, approximately 3,000 to 5,000 children are born with this chromosome disorder.
A high incidence of cases among young mothers was recorded, but a search for environmental factors contributing to non-disjunction in this relatively young age group was unrevealing.
Our son’s Down syndrome diagnosis difficult, traumatic -Parents
When Mr. Olaogun (not his actual name) gave birth to his son Muyiwa (not his real name) 28 years ago, it was hard to tell he had a condition because he looked so handsome.
The infant appeared healthy and was doing well, but the Olaogun’s family trouble began when Mayowa fell ill, started to lose weight, and was eventually diagnosed as having Down syndrome about seven years after his birth.
Mr. Olaogun attributed his lateness in knowing what went wrong with his son to the little knowledge he had about Down syndrome. Although he said Muyiwa had challenges with developmental milestones such as sitting, crawling, and walking which were delayed in comparison to other children of his age, he never felt his son had a medical condition.
Olaogun said it was a traumatic experience for the family to accept the truth that their son had Down syndrome after being diagnosed with the condition. He acknowledged that despite their best efforts, they continue to face difficulties due to the time and money their family had to spend caring for him.
He said, “We have been coping with the challenges foisted upon us since his birth, especially from when he was diagnosed with Down Syndrome at the age of seven or thereabout.
“We initially registered him to mainstream primary school education and discovered his inadequacies along the line. In our state of confusion, we kept him at home for a while after he ‘passed out’ from primary school.
“During the intervening period, we found a special school where he joined other special needs children for a couple of years. From there, we got the link to the Down Syndrome Foundation of Nigeria. This has been of help.
“How challenging has this been for us? Traumatic, I must say. But we resolved to keep pushing. Our respite has been the discovery of Down syndrome Foundation of Nigeria which has demonstrated commitment to helping to manage Down syndrome and intellectual disability issues. Ever since, we have been trying our best. We are encouraged by knowledge-sharing with other parents and experts in the field.
