World Down Syndrome Day celebration (2)
This is the concluding part of the World Down Syndrome Day celebration held on the 21st of March every year. The date of 21st March is a vivid description that people with Down Syndrome have three copies of chromosome 21 inherited.
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This results in the typical features observed. For emphasis, the theme of this year once again is “End the Stereotype”. Children with Down Syndrome can and mostly do have significant medical conditions. Almost half of all children born with the condition have a heart problem in the form of a hole in the heart. Most of them have holes in both the upper collecting and the lower pumping chambers.
They may also have hearing and visual impairment, lung problems such as high pressure in the lungs, thyroid problems, intestinal abnormalities, seizure disorders, obesity, an increased susceptibility to infection, and a higher risk of childhood leukaemia.
Two types of tests are used to detect Down Syndrome before a child is born. One is a screening test which helps to estimate the risk that an unborn child has Down Syndrome and a diagnostic test which can tell whether the unborn child actually has the condition or not.
Screening tests are cost-effective and easy to perform but because they don't give a definitive answer as to whether a baby has Down Syndrome, these tests are used to help parents decide whether to have more diagnostic tests. They include using ultrasound scans to estimate the thickness of the neck fold called nuchal translucency testing and taking blood samples for triple or quadruple tests.
Diagnostic tests are about 99 per cent accurate in detecting Down Syndrome and other foetuses with chromosomal abnormalities.
However, because they are performed inside the womb, they are associated with an increased risk of miscarriage and other complications. Examples of such tests include chorionic villus sampling and amniocentesis.
Although Down Syndrome cannot be prevented, the health problems that go along can be treated, and there are many resources available to help children and their families live with the condition.
There are impressive achievements by children with Down Syndrome despite their intellectual challenges that come with the syndrome. Children with Down Syndrome are very affable, humorous and full of life.
Most teenagers with Down syndrome exhibit personal independence and privacy in the area of self-care if proper attention is paid to train them. One study found that about 85 per cent of teenagers with Down Syndrome could undertake activities of daily living such as dressing and undressing without assistance.
Almost all could choose their own appropriate for the weather clothing and articulate their preference for fashion styles. Other studies have also demonstrated that almost all teenagers with Down Syndrome could eat and drink independently, helping themselves perfectly to salt, pepper and sauces to their taste.
Also, most teenagers with the condition take pride in their rooms and keep them tidy, arranging their pictures and posters correctly. Other skills that all children with Down Syndrome could do as teenagers include walking and climbing stairs unaided, able to jump with both feet as well as cross roads unaided.
In terms of speech and language development, studies have shown that most teenagers with Down Syndrome are able to get their message across. They initiate and maintain conversation, talk about the past and future aspirations even though it is sometimes difficult for the unfamiliar to hear them clearly.
Facial grimaces, gestures and emotional response are appropriately communicated across by children with Down Syndrome. By way of reading and writing skill attainment, studies have shown that all teenagers in mainstream schools were able to read short sentences and simple books.
They were able to read items in newspapers, write their names and trace the alphabet correctly. In social interaction skills, teenagers with Down Syndrome are able to make and maintain friends, behave acceptably in a gathering and are able to join social activities.
There are several individuals with Down Syndrome who have made history. Paula Sage is a celebrated British actress with a BAFTA award in her honour. Megan McCormick is the first person with Down syndrome to graduate with honours from a technical college in the United States.
Valentina Guerrero became one of the youngest and most popular worldwide fashion icons even as an infant. Angela Bachiller became the first person with Down Syndrome to be elected as a councilwoman in Spain in 2013. Solomon Quansah was a teenager with Down Syndrome who maintained his friendship with his doctor before passing away about three years ago.
Joseph Tetteh is another child with Down Syndrome who looks forward to his visits to his paediatrician because of their friendship. He would not leave the consulting room unless his ears and throat have been examined.
A visit to the New Horizon school in Accra reveals beautiful designs and art crafts made by children with Down Syndrome. The teenagers are independent, feed themselves and communicate freely. Various videos are on social media platforms about how mothers of children with Down Syndrome are taking the challenge upon themselves to train their children.
One such video showed a mother helping her child with Down Syndrome to write the alphabets with a high degree of success. I may not know all but certainly there are more children with Down Syndrome in Ghana who have excelled in various fields in life.
Children with Down Syndrome do thrive better in an atmosphere of love, care and patience. There is no need to neglect, institutionalise or leave them to their fate. They are able to achieve their potential with the right nudges and direction.
There is no need then to assume they don't matter. They are certainly not “spirit babies” and certainly policy makers should factor in their needs. With renewed energy and vigour, let us all help to make children with Down Syndrome enjoy a better life. Let’s “End the Stereotype".
The writer’s email: [email protected]
The writer is a member of Paediatric Society of Ghana and the Director of Medical Affairs, Korle Bu Teaching Hospital.
