Normal Life for Children with Down Syndrome

Down syndrome is a genetic disorder that has caused many children to be isolated by their families and society, generally, but experts say with proper management, children living with such condition can lead normal lives. Martins Ifijeh reports

 It was a beautiful experience for Ada and her husband, Reuben, as they expected their first child after a year of marriage. Like most newlyweds, they already had the picture of a perfect home with their kids. When the gift of pregnancy was bestowed on them, their joy knew no bounds. The picture of their home was falling into place.

Few months before delivery, they did a scan and learnt the baby was going to be a boy. There was no cause for alarm, as the doctors had told them that the baby was kicking fine in the womb with no noticeable health challenge.

According to Ada, “The moment we left the antenatal ward that day, we both agreed we were going to name him Collins – a name Reuben had always said he was going to give his first son. It was a dream come true for him to name our unborn child Collins.”

While the two months before delivery seemed like eternity, as the couple were eager to have Collins join the family, they prepared for him in a special way. Aside the baby shopping, they went ahead to plan the type of school he would attend, while playfully arguing whether he would love to be a medical doctor or lawyer when he grows up.

“In fact, Reuben had concluded Collins was going to love watching football, just like him,” Ada added.

Then the long wait was over. Collins was born. The couple was finally going to have all their wishes come true. “One of the nurses cleaned him up and placed him in my arms. I just couldn’t take my eyes off him. His tiny little hands, feet and face were mind blowing. I was star struck as I couldn’t handle seeing him for the very first time,” she said. “But I noticed the medical team was talking in hushed tones while looking at Collins in my arms. And then they opened up. Collins has trisomy 21, which remains the most common form of Down syndrome, a chromosomal abnormality condition associated with intellectual disability, with a characteristic facial appearance, and poor muscle tone (hypotonia) in infancy.

“The doctor told me he had studied my baby keenly, and that he noticed he has small mouth, slanting eyes, flat face, small ears, etc., which he said were some of the major signs that Collins has a condition known as Down syndrome.”

Ada further stated, “I was too happy to notice all these features. To me, he was the cutest new-born I have ever seen. I only noticed what the doctor talked about after he mentioned them.

“Truly, when I looked keenly, I noticed he was different. He wasn’t like the other children we know. We left the hospital a day after knowing that our love for Collins will not die off, but that our new task has just began, which is how to manage his condition throughout his childhood, enhance his life and ultimately make sure he grows up to achieve his life’s dream as an adult.”

It is two years now since Collins was born. Ada and Reuben have continued to show him love and attention, as they hope to enhance his God-given ability even in disability.

“Though it is not easy, but we made a decision not to first stigmatise him. We take him everywhere we go, because we believe it is only when we love our child that neighbours and the society will love him,” she said.

Ada and Reuben are among the very few couples who have children with Down syndrome but still try to give them the needed attention, while also believing such kids can grow to become that which Mother Nature has planned for them.

For many parents, the condition means the child is half human and he must be kept in the house, away from public eyes. They often consider it a shame for their children with such condition to be seen interacting with other children, or even taking them along with them to parties.

Others even believe the condition means you cannot amount to anything in future; hence no need spending money on his or her schooling and other capacity building programmes.

With such neglect, many children living with the condition in Nigeria end up not seeing the four walls of the classroom. In fact, many even die before they reach adulthood, especially in cases where the parents or guardians do not pay proper attention to their health, because persons with such condition are often said to be defective.

Reports say about half of all affected children have heart defects, eye and dental diseases and digestive abnormalities, such as a blockage of the intestine. Worse still, many of the children are seen as witches and wizards.

But experts believe the best way to raise children with Down syndrome is to give them all the love and attention they need, while giving priority to their health, social, psychological and mental interaction, as this would go a long way in helping them.

For President, Down Syndrome Support Group of Nigeria (DSSGN), Dr. Philips Orhue, the best ways to manage children with the condition is to prioritise early medical intervention, education, vocational training and early social integration. Orhue said if these were not put together, a lot of them might not be able to live, because their condition predisposed them to lots of medical issues, which if not corrected could lead to death at a very young age.

He said with the medical issue being addressed, such children should be exposed to education and social interaction, adding that for many who were unable to go through the formal education, they can be exposed to skills acquisition. “All these will make them useful to the society. None of them should be written off. They can be nurtured into their full potential,” he said.

Orhue called on parents and the society, in general, to stop stigmatisation of children with the condition, adding that, that was the first thing that must be taken away.

According to the World Health Organisation (WHO), Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21, referred to as Trisomy 21, which therefore means individuals with the condition have 47 chromosomes instead of the usual 46.

Orhue said this might be caused by an error in cell division called non-disjunction, which leaves a sperm or egg cell with an extra copy of chromosome 21 before or at conception. He said Trisomy 21 accounted for about 95 per cent of Down syndrome cases, with 88 per cent originating from non-disjunction of the mother’s egg cell.

He said, “Additional genetic material alters the course of development and cause the characteristics associated with the disorder. This makes it somewhat difficult to differentiate people with Down syndrome if a large number of them converge in the same venue due to the physical characteristics they share.

“The remaining five per cent of Down syndrome cases are due to conditions called mosaicism and Robertsonian translocation. Mosaic Down syndrome, experts say, results when some cells in the body are normal while others have Trisomy 21.

“Robertsonian translocation occurs when part of chromosome 21 breaks off during cell division and attaches to another chromosome (usually chromosome 14). The presence of this extra part of chromosome 21 causes some Down syndrome characteristics. Although a person with a translocation may appear physically normal, he or she has a greater risk of producing a child with an extra 21 chromosome.”

He emphasised that Down syndrome was not linked to social or economic status, nationality or religion, stressing, “In addition to other traits unique to individuals with the disorder, a few of the common traits are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the centre of the palm. These cause delay in physical and intellectual development.”

Orhue said the government and stakeholders should pay attention on persons with the condition. “Just as it applies in most developed countries, the government can support persons with Down’s syndrome in several capacities, including policies that would stop them from being discriminated against both in their homes, place of work, among others,” he said.