Empathising with Down syndrome victims

It is an unimaginable thing if a child’s right to life is decided ever before his arrival on planet earth. And incidentally, the events leading to the choice of this decision is no fault of the child. Available statistics show that 90 percent of people diagnosed with Down syndrome are never allowed to be born due to prenatal testing and subsequently recommendations from uninformed doctors to get rid of the unborn child. Therefore, a person with the condition will be fortunate to be born at all. This is in deviance of the injunctions as contained in the holy books of Christian and Islamic religions which forbid abortion.

The origin of Down syndrome can be traced to John Langdon Down, an English physician that first described the external appearance of the genetic condition in 1866 that was later to bear his name. Prior to the reported study on the incidence of Down syndrome by Adeyokunnu of the University of Ibadan, Ibadan, who reported an incidence of 1 in 865 live births, it was believed that Down syndrome was rare or non-existent among Africans. This was corroborated by the reports of other clinicians that found no case of Down syndrome in their clinical studies. It was found out that the main factor that would explain the prevalence of this condition in Nigeria is the increasing maternal age at which more women in Nigeria now conceive. This follows the increasing strong desire to complete formal education before conception and the rising incidence of infertility.

In every cell in the human body, there is a nucleus where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Therefore, individuals with Down syndrome have 47 chromosomes instead of the usual 46. This additional genetic material alters the course of development and causes the characteristics associated with the disorder. Usually, it is always 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.

Down syndrome is a chromosomal disorder that occurs in one in every 691 live births and is not linked to race, nationality, religion and social or economic status. In addition to other traits unique to individuals with this 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. In essence, it causes delays in physical and intellectual development. It is important to note that people with Down syndrome may possess these characteristics to different degrees.

This condition is usually caused by an error in cell division called non-disjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. Although for some time now its prevalence has been linked with advancing maternal age, it has been recently observed that 80 percent of children with Down syndrome are born to mothers under the age of 35.

During the pre-natal period, two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome while the diagnostic tests tell whether or not the baby actually has Down syndrome. The most commonly used screening test is “The Triple Screen”, a combination of three tests that measure quantities of various substances in the blood. These tests are carried out between 15 and 20 weeks of gestation. In conjunction with other screenings, sonogram, a form of ultrasound, is performed to show some physical traits that are helpful in calculating the risk of Down syndrome.Three diagnostic tests are currently available in the detection of this condition during the pre-natal period, that is, the period before the birth of a baby. These are Amniocentesis, performed between 12 and 20 weeks gestation; Chorionic Villus Sampling (CVS), conducted between 8 and 12 weeks; and Percutaneous Umbilic.

However, it is usually identified at birth or shortly thereafter by conducting a Karyotype test, a chromosome study which provides a visual display of the chromosomes grouped by their size, number and shape. This is carried out through the examination of blood or tissue cells. The aforementioned physical characteristics commonly seen in babies with this disorder are also used in the diagnosis after the birth of the baby.

Aside from both children and adults with Down syndrome experiencing developmental delays and mild to moderate impairments, many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40 percent of the children have congenital heart defects. Therefore, it is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. While some of the heart conditions require surgery, others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, visual and hearing problems as well as thyroid and other medical conditions.

Caring for people with Down syndrome can be frustrating and fraught with challenges, as expressed recently by an American mother of a 40-year-old son with Down syndrome. She regretted ever giving birth to the child because he practically depends on her for everything. But it should be noted that they also have many talents and gifts and should be given the opportunity and encouragement to develop them.
To achieve the aforementioned, early intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighbourhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized programme.

Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.

To overcome the health challenges being faced by these special people, appropriate medical care should be given so that they can lead healthy lives. If given adequate care, the average life expectancy of individuals with Down syndrome is 55 years, with many living into their 60s and 70s.

In conclusion, all tiers of governments, individuals and non-governmental organizations should rally support for parents and people with this disorder. And with the passage of the Child Right law, their rights should equally be respected and protected as those of normal children.

BILKIS BAKARE
Bakare is of the Features Unit, Ministry of Information & Strategy, Alausa, Ikeja.