Integrate, don’t hide children with Down syndrome, expert urges parents

The National President, Down Syndrome Foundation Nigeria, Rose Mordi, has cautioned parents against hiding children with Down syndrome and advised them to instead, encourage social integration.

She urged them to ensure that they get the right care early in life, stressing that it can make a big difference in helping them to live a meaningful life.

Speaking with PUNCH Healthwise in commemoration of the 2022 World Down Syndrome Day, Mordi explained that the condition is a genetic disorder and not an illness as perceived by many.

“We should have 46 chromosomes in ourselves but a person born with Down syndrome has a condition of extra genetics that causes delay in development, both mentally and physically,” she added.

World Down Syndrome Day is observed every year on March 21, with a specific theme. It is a global campaign meant to raise awareness about the condition and an initiative backed by the United Nations.

This year’s event is themed ‘#InclusionMeans’ and would be the 11th meant to raise awareness and stand with those living with the condition.

The event is spearheaded by Down Syndrome International, which had linked up with national charities across the world to develop activities and events to raise awareness and support for those living with the condition.

According to the Cleveland Clinic, a non-profit academic medical centre in the United States, majority of babies born with Down syndrome have an extra copy of chromosome 21.

“Down syndrome is a genetic disorder. Most babies are born with 23 pairs of chromosomes within each cell for a total of 46. A chromosome is a structure that contains genes, which are made up of your DNA. Genes determine how you form and develop and grow in the womb and after birth. The majority of babies with Down syndrome are born with an extra copy of chromosome 21, with three copies of the chromosome instead of the usual two,

“As a result, people born with Down syndrome face some physical and mental challenges throughout life. They typically have distinctive body and facial features that set them apart. They are more likely to develop slowly, and are more at risk for some medical conditions,” the centre stated.

WebMD, an online health portal, noted that Down syndrome is a lifelong condition that cannot be cured.

According to the Centres for Disease Control and Prevention, about 6,000 babies born in the United States annually have Down syndrome, noting that it occurs in about 1 in every 700 babies.

The earliest reported study on the incidence of Down syndrome carried out in Ibadan and published in PubMD, an online health journal, reported an incidence of 1 in 865 live births

Commenting on the management of children with the syndrome, Mordi emphasised the need for them to be properly taken care of.

“There are three types of the syndrome. We have trisomy 21, mosaic, and translocation. They are all the same but the severity differs. All that is required is to take care of them medically, educationally and socially,” she said.
Mordi revealed that a child born with the condition is predisposed to some medical issues such as congenital health disease, but was quick to add that early detection can go a long way in case management.
She said, “A child born with Down syndrome is predisposed to quite a number of medical issues. Down syndrome is not an illness but it predisposes them to some ailments. These ailments are not peculiar to them but are prevalent among them. The most serious one is the congenital heart defect commonly called hole in the heart.

About 60 per cent of children born with Down syndrome are predisposed to congenital heart disease. What needs to be done is for it to be detected early. We need medical personnel to detect the fact that they might have it so that a corrective surgery is carried out immediately, or they are placed on medications to have it corrected.”

The DSFN president also emphasised the importance of giving children with Down syndrome access to special education.

She said, “They also need to go to school. Unfortunately in our part of the world, regular mainstream schools have not been well-equipped to take care of their peculiar needs. They need specially trained teachers to teach them how to cope with classroom exercises. They are mentally below the normal intelligence quotient, but once they are trained, it is for life. They are good visual learners. That is why we need specialised schemes to train them. They do very well in vocational training.”

Based on this year’s World Down Syndrome Day — Inclusion Means, Mordi appealed to members of the society and family members not to discriminate against children with the syndrome.

She said, “Early social integration is key because some of them are either hidden away by their families or the society does not want to relate with them. That is where education and awareness creation comes in. We need to create awareness. They should not be discriminated against.

“These areas should be worked on by the government, the private sector and family members. Family members are the first set of people to discriminate against them by hiding them. It is either they feel ashamed or it doesn’t suit their image.

“A lot of people don’t know about this condition. Most do not know that those living with the condition can be trained to be more useful in the society. Most people lock them away and say nothing good can come from them. That is why this year’s theme is inclusion means.”

Speaking on efforts made by the Down Syndrome Foundation Nigeria, to make life meaningful for those with the condition, Mordi said the organisation usually facilitates vocational skill acquisition programmes.

She added, “We have trained them in vocational skills that can help them to hold up on their own, but the problem is that the society still does not accept them. Most people in the society are ignorant of their capabilities to be independent like every other person.

“We have a global project at hand. We are partnering with other international organisations like Inclusion International and Down Syndrome International as prospective employers. We want Nigerians to know that these children and young adults are capable of being included in the scheme of things.”

 

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