Understanding Children with Down Syndrome

Cases of Down syndrome still occur in Indonesia, even rising in number in 2018. Down syndrome isn’t always connected to genetics.

KOMPAS/JUMARTO YULIANUS

Children with Down syndrome release balloons of prayer and hope during an event to mark World Down Syndrome Day themed "Great Down Syndrome Children" on 24 March 2019 in Banjarmasin, South Kalimantan. Special needs children, just like all children, need to feel accepted, understood, loved, and supported to become independent and outstanding individuals.

Cases of Down syndrome are still found in Indonesia, even in an increasing number in 2018. Down syndrome isn’t always caused by the genetics of parents. Various risk factors faced by their mothers during pregnancy can cause syndrome.

Having children who can grow normally in the way their peers do, physically, cognitively and emotionally, is the dream of all parents. However, some children have barriers to their growth, among others are those affected by Down syndrome.

Down syndrome is a genetic anomaly. The genetic abnormality occurs when the infant conceived has an additional chromosome 21 that causes Down syndrome. The extra chromosome 21 can happen in full conception or only in part of the process, which is formed during the growth of the ovum, the creation of the sperm cell and that of the embryo.

The risk of mothers conceiving infants with such drawbacks is not only genetic-based, but also dependent on different other factors.

Down syndrome is usually identified at birth with the presence of certain physical characteristics like weak muscle tone, a single inner fold of the hand palm, a rather flat facial profile with an upward slant toward the eyes. But for the sake of accurate diagnosis, a blood sample test to determine the number, size and shape of chromosomes and a genetic test like fluorescence in situ hybridization (FISH) are required, the results of which can be obtained in a short time.

Data from the World Health Organization estimate that 3,000 to 5,000 babies are born with Down syndrome annually. Based on 2010 Basic Health Research findings, cases of Down syndrome in children aged 24-59 months reached 0.12 percent. In 2013, their rate increased to 0.13 percent. Later in 2018 they soared to the level of 0.21 percent.

The risk factors experienced by mothers affect the increase in the number of children born with Down syndrome. The risk of mothers conceiving infants with such drawbacks is not only genetic-based, but also dependent on different other factors.

NIKOLAUS HARBOWO

A Layak Foundation ophthalmologist examines the sight of a child with Down during an event to mark World Down Syndrome Day 2018 themed "I Am, I Can" on 24 March 2018 at Bentara Budaya Jakarta.

Risk factors

Apart from the genetic factor, the age of expectant mothers, the history of previous pregnancies with Down-syndrome infants, the number of and age difference between siblings, the mothers’ folic acid deficiency during pregnancy and the environment of being exposed to chemicals are the risk factors leading to conceiving infants with Down syndrome.

The age during pregnancy actually does not cause Down syndrome, but it constitutes one of the risk factors. Down syndrome can emerge at any age of expectant mothers. But the chance of occurrence of Down syndrome will increase along with advancing age.

The risk of conceiving babies with genetic problems, including Down syndrome, is believed to increase as the age of women reaches 35 or older when they get pregnant. This condition is caused by older women’s ova which have a greater risk of experiencing incorrect chromosomal division. The risk of Down syndrome is basically already present before fertilization.

Besides causing a chromosomal anomaly in fetal growth, smoking during pregnancy can even make babies born with a heart abnormality.

Pregnant mothers’ risk of bearing children with Down syndrome is also very high if they have previously given birth to babies with this syndrome. Women who have conceived babies with Down syndrome have a higher risk of their next children having the same syndrome. This also applies to parents with translocation Down syndrome, with the risk of affecting their infants.

Research results of Markus Neuhäuser and Sven Krackow from the Institute of Medical Informatics, Biometry and Epidemiology at Hospital Essen University have even found that the risk of babies born with Down syndrome also depends on the number of siblings and the age difference between the youngest child and the baby conceived. The farther the age difference between pregnancies the higher the risk of babies born with Down syndrome.

Deficient folic acid consumption by expectant mothers can also be a risk factor for babies born with Down syndrome. A sufficient folic acid intake can help prevent potential fetal abnormalities, including Down syndrome. The folic acid needed when planning to be pregnant or during pregnancy is around 400–800 mg, which can be derived from green vegetables, fruits, beans and grains as well as gestation milk.

Expectant mothers’ exposure to chemicals also becomes a risk factor for babies born with Down syndrome, ranging from vehicle emissions, cigarette smoke to cosmetic products. Besides causing a chromosomal anomaly in fetal growth, smoking during pregnancy can even make babies born with a heart abnormality.

KOMPAS/HARIS FIRDAUS

Painting by Putri Pertiwi, a woman with down syndrome.

Eliminating stigma

The presence of children with Down syndrome often lacks proper care by their parents. Especially their mothers are frequently under stress. This condition adversely affects the care received by the children with Down syndrome from an early age. These children also have to encounter a stigma no less severe than what their parents are undergoing.

In fact, from their birth, children with Down syndrome should be handled intensively. Thorough health checks are required to detect any likely abnormality in other organs, particularly the heart. It’s because 30 percent of Down-syndrome children have heart trouble. Therefore, overall checkups to ascertain their proper growth should be prioritized by parents from the birth of children with this syndrome.

Children with Down syndrome face the stigma that they have deviations and maladaptive functions. The stigma attached to these children indicates the public failure to understand their condition. Actually, the children with Down syndrome have individual potential and should be given opportunities because they can do everything although in a slower rhythm.

Mothers’ attitude can support the growth of children with Down syndrome so as to become more positive. In their limitations, these children are able to optimize their individual potential equal to normal people and display their active role in social life as long as they are allowed the opportunities to do so.

KOMPAS/JUMARTO YULIANUS

Some children with Down syndrome take part in coloring pictures an event to mark World Down Syndrome Day with the theme "Great Down Syndrome Children" in Banjarmasin, South Kalimantan, Sunday (24/3/2019).

Positive support from people around them and nearby communities as well as the broadest opportunities and spaces for developing themselves, tapping all their capabilities, talent and interest to play their role and make optimal contribution become the right that should also be given to children with Down syndrome.

For parents, it will be very helpful if they join the community like the Association of Parents and Children with Down Syndrome (POTADS) and the Indonesian Down Syndrome Union (ISDI). At any time their members can share experience and information while strengthening each other. Mothers and fathers having children with Down syndrome will feel accompanied in caring for and bringing up their children.

Support and opportunities for the development of children with Down syndrome should also be continuously provided by the government in order to realize the spirit of the Convention on the Rights of Disabled People in Law No.19/2011. The main principle of Sustainable Development Goals is “Leave No One Behind” including children with Down syndrome.

These children come under the responsibility of the government so that they reserve the rights to education, healthcare and all the requirements needed by normal individuals. (KOMPAS RESEARCH & DEVELOPMENT DIVISION)