Professor Fraga
English 20-14
4 November 2013
A
Child Diagnosed With Down Syndrome
When any parent is informed that their child
has Down syndrome, their world comes to a complete stop. They are too overwhelmed by the
emotional ramifications of the diagnosis. All that is running through
their minds is that raising their child will be much more challenging than
one without disabilities. In a video titled, Parents and Down Syndrome, Kim, a mother of an affected
child, describes that she felt hopeless when she found out her son had Down
syndrome. In “How to Raise a Child With Down Syndrome: Advice and
Resources,” author Amy Julia Becker says it felt daunting to just process the
medical, social, educational, and behavioral challenges ahead. Typically,
new parents only hear the negatives about Down syndrome and receive very little
support from one of the people they trust the most, their doctor. Jane,
another mother from “Parents and Down
Syndrome” says that when new moms get their diagnosis, their doctors
say, “Your baby has Down syndrome, when do you want to terminate?” This
shows the mindset that doctors have towards the condition—that abortion should
immediately follow diagnosis. It is as if new parents have no other
choice because the outcomes and risks are unpredictable in each case.
Ultimately, the parents’ love and desire to protect and nurture their
newborn baby gives them the courage to conquer upcoming challenges. When
a child is born with Down syndrome, the family faces many challenges, especially
with adjusting socially, economically, and structurally.
Down syndrome is a genetic condition that
causes human birth defects. While
normal humans are born with two copies of each chromosome, one from each
parent, individuals with Down syndrome have three copies of the entire, or
portions of, chromosome 21. This occurs due to non-disjunction at
chromosome 21, an error in cell division that leads to a disproportionate
number of chromosome copies in a human egg or sperm cell. According to
“Down Syndrome Facts,” DSACT expresses that the cause of non-disjunction is
still unknown, however, the probability of this occurrence increases as the
mother’s age increases. According
to an article titled, “Down syndrome phenotypes: The consequences of
chromosomal imbalance” published in the Proceedings of National Academy of
Sciences, Down syndrome is the major cause of mental retardation and congenial
heart disease. In addition, the
condition leads to delays in physical and intellectual development (“Down
Syndrome Facts”). Children with
Down syndrome have slowed growth development and distinct physical
characteristics. Most affected individuals do not reach their average adult
height. Some physical features include upward slanting eyes, flattened
nose, small ears, small mouth, decreased muscle tone at birth, and excess skin
at the nape of the neck (“Down Syndrome”). Intellectually, children
with Down syndrome may have mild to moderate impairments and would need
physical, speech, and developmental therapy services early in life (“Down
Syndrome Facts”). Although the acceptance of having a child with
Down syndrome can be difficult, the hardships that
affected families endure make them stronger, closer, and more focused on the
things that really matter in life (“Trick or Treat: Having a child…”).
Adjusting socially to
having a child with Down syndrome can be very challenging for not only the
affected person, but also for the family members as well. In a study
conducted by Sari, HY, et al. from
Pediatric Nursing in Turkey, affected families had limited social contact
outside the family, concealed their child’s condition from their families, and
had negative reactions from strangers.
They also found that families who had children ages 1-3 had the most
limitations on social contacts because their children needed more care.
One mother who was interviewed mentioned that she could not do something
as simple as joining social activities or visiting people because her affected
son was always sick and suffered from upper-respiratory tract infections.
She did not want to endure the troubles of bringing her son along with
her to public places. Other mothers said that they were not able to visit
other people because they were afraid that their child would attract attention.
Some parents refuse to tell their families that their child has Down
syndrome out of fear that it might
be frowned upon. In "Meriel’s story: having a child with Down’s
syndrome," Meriel explains her struggle in revealing the news of her
affected daughter to her family. She believes that her mother is ashamed
of her situation because she does not want to tell anyone. Sari, HY, et.
al also found that the families of children in all age groups experienced
negative reactions from strangers.
One family recalls a time when their new neighbors expressed that they
were afraid of him and thought he was “insane.” The affected son responded
very aggressively and asked self-deprecating questions to his mother, including
why she gave birth to him, why his face looks the way it does, and why he
cannot think and speak well. Strangers
have gone to great lengths to express their disapproval by also making
references to Christianity. In the study conducted by Sari, HY, et. al, one person said, “When you visit someone, you start to
get questions like ‘You believe in God, right?’ ‘Did you marry a close
relative?’ ‘Maybe this is a punishment for something you have done.’” In a related article by Andrea Useem, titled “How Does Religion
Influence the Choice to Continue a Down Syndrome Pregnancy?" she states
that termination rates for prenatal Down syndrome diagnoses are high, possibly
because people do not want to receive such negative reactions. The
families of children with Down syndrome are so heavily influenced by these
negative responses from everyone who surrounds them that they must cope by
altering their daily lives.
In
many cases, affected families endure financial struggles in caring for their
child with Down syndrome. Children with Down syndrome are likely to
develop serious health conditions that require extra medical attention than a
typical child. This varies on a case-by-case basis. In “Down
syndrome phenotypes: The consequences of chromosomal imbalance,” Korenberg, et.
al explain that Down syndrome is a major cause of congenital heart disease and
is associated “with congenital anomalies of the gastrointestinal tract, an
increased risk of leukemia, immune system defects, and an Alzheimer-like
dementia.” The cost of treating these conditions, if applicable, can be
very expensive. According to Waitzman’s
1996 analysis result of direct medical costs by individuals with Down syndrome,
the annual per-capita medical costs for a child age 0-1 is $27,265. It
decreases for children between the ages of 2 and 17, but then rises to $7,529
for children 18 years and over. This could be difficult for anyone
raising a child with developmental disabilities because the treatments for
these conditions are very costly.
Most parents intend to provide enough financial support to ensure that their
children are economically stable in the future, but this can be very difficult
for families with affected children. At often times, they are unable to
do so because of their economic situations (Sari, HY et. al).
Although the average cost of a child with Down syndrome may vary
due to the uniqueness of every case (mild or moderate), the cost is still much
higher than a child with no developmental disabilities.
In addition to adjusting socially, families
must adjust structurally to ensure that they are providing enough care for the
child with Down syndrome. Parents cope by making changes in their work
schedules and by gaining assistance from their other children, if applicable.
Some parents are pressured into making career sacrifices that would allow
them more time to take on more responsibilities. In several cases, some
mothers will switch from working full-time to part-time in order to make
themselves more available to their child (“Cost”). For families with
multiple children, most parents would ideally divide their time equally amongst
their kids, but becomes impossible to do so for children with Down syndrome
because they require extra attention. This leads other siblings to take
personal responsibility for their affected sibling when needed. In an
interview with Yannick Aranas, a college student,
describes his personal experiences growing up with his affected younger
brother. “Isaiah is very dependent--he will not execute his personal
humanly needs like eating and using the bathroom until he is told to,” he says.
As a result, Yannick needed to take the personal responsibility of caring
for his brother while his parents were at work. “Maybe that is why
I never tried any activities when I was younger. I did not learn how to
play an instrument or play a sport like my friends did. I am not quite
sure when in my life I was able to fully understand his condition, but looking
after him was something that I had to do.” The family structure is not
only affected in the present, but also in the future. At often times,
individuals with Down syndrome are placed in a home for the remainder of their
adulthood, while others remain under the care of their families. “When I
get older, I want to take my parents’ responsibility of caring for Isaiah.
I will have him live with me when I start my own family because I do not
want to put him in a ‘home.’ I want him to live normally with a family
that loves him.” Even though it is a struggle to provide extra care for a
child or sibling with Down syndrome, it allows the child to live their life as
normally as possible while strengthening the family bond.
There is no doubt that parents would rather
have a child with no disabilities. However, with the right information, a
strong support system, and extensive care, Down syndrome does not need to have
a negative label. In fact, in Amy Julia Becker’s article, “How to Raise a
Child With Down Syndrome: Advice and Resources,” she quotes Sue Levine’s
six-year study published in American Journal of Medical Genetics that
99% of people with Down syndrome feel happy with their lives. Becker also
reports that having a family member with Down syndrome has been an eye-opening
and inspiring experience. As their child grows and develops more, most
mothers are glad that they did not terminate their pregnancy because of
everything that they have learned so far about raising a child with a disorder.
From the video titled, “Parents and
Down Syndrome,” Lynn, a mother of a Down syndrome child, tells other
expecting parents that even though it does not feel like it at first, it is
truly a blessing to have a child with Down syndrome. Moreover, siblings
of the child with the condition have grown to be more patient and accepting
because of the hardships that they have endured (Becker). Roughly 79% of
parents have learned to appreciate the small things in life and believe that
true success is not measured by accomplishments or possessions, but by the love
and small victories. Certainly, raising a child with Down syndrome comes
with many challenges, but the joys definitely outweigh the struggles.
Works
Cited
Aranas, Yannick.
Personal interview. 1 Nov. 2013.
Becker, Amy Julia.
"How to Raise a Child With Down Syndrome: Advice and Resources." Parents.com, 2012. Web. 26 Oct. 2013.
"Cost." The
Complete Guide to DOWN SYNDROME. N.p., n.d. Web. 27 Oct. 2013.
"Down
Syndrome." The New York Times. N.p., 16 May 2012. Web. 26 Oct.
2013.
"Down Syndrome
Facts." Down Syndrome Association of Central Texas (DSACT). N.p., n.d. Web. 26 Oct. 2013.
"Down syndrome
phenotypes: The consequences of chromosomal imbalance." Proceedings of The National Academy of
Sciences 91 (2012). Web. 26 Oct. 2013.
"Meriel’s story:
having a child with Down’s syndrome." Telling Stories. N.p., n.d.
Web. 26 Oct. 2013.
Parents and Down
Syndrome - CBN.com. 2012. The Christian
Broadcasting Network. Web. 27
Oct. 2013.
Sari, HY, G Baser, and
JM Turan. “Experiences of Mothers Of Children With Down Syndrome.” Pediatric Nursing 18.4 (2006): 29-32. CINAHL
Plus with Full Text. Web. 25 Oct. 2013
"Trick or Treat:
Having a child with Down syndrome will ruin your life." Bringing The Sunshine (No Matter the Weather). N.p., 27
Oct. 2011. Web. 26 Oct. 2013.
Useem, Andrea.
"How Does Religion Influence the Choice to Continue a Down Syndrome Pregnancy?" NBC New York.
N.p., 5 Sept. 2008. Web. 26 Oct. 2013.
Waitzman, . Table
III.8-1: Annual Per-Capita Medical Costs of . Chart. Chapter III.8 ed. N.p.: n.p.,
n.d. N. pag. Web. 27 Oct. 2013.
