Life with Down’s Syndrome

Worldwide, 100,000 babies are born with Down’s Syndrome (DS), but it is rarely discussed or even acknowledged by those who do not have first-hand experience (Harvery, 2004, 43). Down’s Syndrome was originally acknowledged by John Langdon Down in the 1800’s, its causes were not discovered until 1959 by Jerome Lejeune, and its symptoms are continually being researched. You have come to this blog to educate yourself on how to best help your child with Down’s Syndrome.

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Although Down Syndrome cannot be cured nor reversed, it is beneficial to understand what this disorder is, how it affects the child, and what you can do to provide the most effective ways of caring for them.

Many are aware that DS is due to an abnormal presence of a third copy of chromosome 21. This extra chromosome presence can be labelled as trisomy 21, mosaic trisomy 21, or translocation trisomy 21. Trisomy 21 is when there is an extra copy in every cell, and it is the most common. Mosaic trisomy 21 is an extra copy present in most cells. Translocation trisomy 21 is an extra copy attached to another chromosome. The causes of this extra copy are unknown, but it has been proven that “the risk of having a child with DS increases with advancing maternal age” (Boling, 2018).

Because DS cannot be prevented, it is best know how to be able to identify it. You can easily find out if your child potentially has DS before or after birth through karyotyping. Karyotyping is an invasive procedure will analyze the baby’s cells and identify the number of chromosomes, so that you will be able know early on if your child is at risk. Prior to birth, you can also discover your child’s diagnosis ” via amniocentesis, chorionic villus sampling, or percutaneous umbilical blood sampling” (Boling, 2018).

Physically, children with DS possess similar conditions. Overall, their facial features are quite uniform, including a “round, flattened face… small ears [and a] short neck” , but they also tend to be shorter and gain weight more (Apetrei, 2018, 82). The presence of the additional chromosome 21 tends to prohibit development internally and externally. Boling (2018) notes how important it is for mothers to learn alternative feeding methods because their newborn will not be able to breastfeed due to “poor sucking reflexes, a protruding tongue, and nasal congestion” (2018). The abnormal development can affect any or every system. Whether it be an organ did not form correctly or is not functioning to its full capacity, your child throughout his or her life will require regular visits with a team of physicians who specialize in areas that most commonly interrupt the child’s abilities. The underdevelopment most commonly affects cardiac function and “40 per cent of babies… will have a heart problem” (Harvey, 2004, 43). Children with DS are also more likely experience problems within their respiratory and gastrointestinal systems, but they will still have the ability to live healthy and moderately active lives. Additionally, children with DS have troubles in their eye health. It is common for a child to require glasses or even have nystagmus, which is simply rapid movement of the eyes. It is possible that your child could develop congenital cataracts, which would require surgery, or have inflammation.

Along with physical troubles, your child will struggle psychologically. According to Boling (2018), 38 percent of DS children can have mental disorders including ADHD, OCD, depression or autism (2018). It is not guaranteed that your child will develop any of these psychological disorders, but it is beneficial to attend mental checkups along with physical to make sure that your child is being treated correctly. Though if your child does have one of these disorders, it is not detrimental, but it will produce more obstacles for the child’s psychological development and learning and behavioral abilities. Every child with DS has decreased cognitive abilities which can affect their ability to learn and communicate. It is very common for DS children to take longer to learn than the average child because they do not process and obtain information the same way because their brain is structured differently (Apetrei, 2018, 82). Because their ability to learn is hindered, the development of their gross motor skills, like standing, walking, or running, can require more time before it becomes familiar to them.

Though these challenges could damage the child’s self-esteem, DS children in actuality excel in social interaction because they possess strong empathetic abilities. Due to their ability to be compassionate and charismatic towards others, there is no need for improvement on their part. However, as mentioned above, DS children are ostracized from society for their differences. Some children may also face social ridicule because of their financial status. Many families cannot easily afford the medical bills required to keep their child healthy, so their living situation may or may not fit the social norm. The Joseph Rowntree Foundation found in a survey that even extended family members show little support (Harvey, 2004, 44). That is why it is highly recommended that DS children attend support groups to find people who they can better relate to, and parents can also benefit from attending by learning from each other.

In addition to attending support groups, occupational therapy will also significantly improve your child’s physical and psychological skills. Each session of occupational therapy is completely focused and designed around the needs of your child because much of the “treatment depends on the type and level of disability” (Boling, 2018). In therapy, the child will learn how to improve their daily or habitual motor skills that they would need to function properly at home or in a public setting. For therapists working with kids, they often will use play-based occupational therapy to develop “personal grooming, participation in education, play and leisure, motor and sensory rehabilitation” through activities that they would find interesting (Apetrei, 2018, 82). Therapists will also advise the parent to reinforce the skills to the child at home, so the skills become second nature. DS children can also attend speech therapy, if they need, to improve their language and speech so that they can better communicate with those around them.

To sum up, Down’s Syndrome is a lifelong and complex genetic disorder that requires full time care for children who have it. Though it is a very common disorder, it is rarely ever discussed because of misconceptions people have. Down’s Syndrome can affect your child’s life physically, psychologically, and socially, but you discovered the multiple forms of treatment and care. It is best for everyone to take the same steps as you did to learn what this disorder is and prevent any more prejudice from arising to allow efficient forms of care to grow.

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