I. What I knew
I remember looking at my cousin Ricky and wondering why he looked so different. He was the only one in a family of dark skinned Hispanics who was stark white. He had blond hair, beady blue eyes, a stocky body frame and a laugh that echoed throughout the mountains of Tucson. Most of the time he was his happy jovial self but the rest of the time he was sick. I can remember how paranoid everyone would get anytime someone got a slight cough. My aunt used to always say, Ricky can t get sick or he might die. The truth of the matter was the doctor s had told her that he would not live to see the tender age of seven. The only thing I knew at the time was that Ricky sure looked funny when he laughed because you could hardly see his eyes and he didn t talk very good at all. They told us that he looked different from us because he was retarded. My aunt said he was special because he was a mongoloid.
II. What I Wanted to Know
There are many questions I had but instead decided to focus on the one s I felt most strongly about:
*Why are some People born with Down s syndrome?
*What is the life expectancy of a person with Down s syndrome?
*Is there any type of treatment?
My search began by making several trips to the UTSA library as well as to the San Antonio library and spending several hours on my computer at home looking for whatever information I could find about Down s Syndrome. I was also able to interview a doctor I knew in the Navy who gave me a lot of information on my topic. I was also lucky that my aunt Delia who is the mother of a twenty eight year old man with Down s happened to be in town for a wedding and gave me first hand knowledge of my topic.
It was my aunt who taught me the meaning of honesty. Not because she actually was honest, but because she lied all the time. I think she felt that the easiest way out of any given situation was generally the best way out. For her, that meant telling a lie that sounded believable. As a young child I thought it was cool to lie and get out of things so easily and being around my aunt was the main ...
Down’s syndrome is a genetic condition involving an extra chromosome, this change occurs around the time of conception. According to some information I found
Children with Down Syndrome (DS) account for one of every 800 births. The risk of chromosome disorders like DS, trisomy 13 and trisomy 18 increases with maternal age. The incidence of DS at birth is lower at age 20 (1/1600) than at age 35 (1/370), but many younger women have children than older women. So most (75-80%) DS children are born to younger women. If a couple has a child with DS, there is usually an increased risk for a second affected child. (Smith)
People with Down’s syndrome all have a certain degree of learning
disability. This means that they develop and learn more slowly than other
children. However, most children with Down’s syndrome today will walk and talk,
many will read and write, go to ordinary school, and look forward to a semi-
independent adult life. (636-638, Platt and Carlson) Generally, life expectancy is reduced by 10-20 years. Some people with Down Syndrome, however, have been known to live into their 80’s. (http://www.nas.com/downsyn/faq2.html)
After interviewing Dr. James Montgomery a Navy medical officer he gave me some things that people who suffer from Down s have to deal with.
*Down syndrome is not a lethal. One to two percent of persons
born with this disorder have uncorrectable heart defects at birth. The average
life expectancy for all others is now beyond age 55 years.
*Today less than 5% of persons with Down syndrome have severe-to-
profound mental retardation. The majority are on the border of mild-to-moderate
mental retardation, and some are exhibiting normal IQ scores today.
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*The average reading level for persons with Down syndrome is 3rd grade,
with many reading at 6th-12th grade levels today.
There is no cure for this syndrome, but the option not to have a child with Down already exists. Tests during pregnancy can detect the condition. According to one study where they tested the Serum screening it was found to be able to detect between 36percent and 76 percent of fetuses affected by Down s syndrome, depending on the combinations of serum markers used. (407-412, Bobrow, Hall, and Marteau)
It is evident that the debate over screening for Down syndrome is far
from settled. It is also evident that people with Down syndrome can make an
important contribution to our society. I think if parents are not prepared to
take on the challenges of a child with Down syndrome they should have options,
should one of these options be abortion?
IV. What I Learned
I would have a hard time supporting someone’s decision to abort, especially
having lived with my cousin Ricky for five years of my life.
From what my aunt tell told me there are many support groups for families who have children with Down s syndrome, there are also many families willing to adopt. The programs at school for these children are very adaptable to the needs of the individual. Most children with Down s syndrome can go to school and get along well, they make a
valuable contribution to the classroom and their fellow students. The decision is a difficult one and I think that there are many options that need to be explored before anyone can make an informed decision. Watching my cousin grow into the man he is today has strengthened my belief that although Down s is a terrible thing, with a loving family they can enjoy life.
Bobrow, Martin, Hall, Sue, and Marteau Theresa M. Psychological Conseqences for
parents of false negative results on prenatal screening for Down s syndrome British Medical Journal 320.7232 (12 Feb 2000) : 407-412
Platt, L. and Carlson, D. Prenatal diagnosis – when and how? NEJM 327
Smith, David S. Frequently Asked Questions Understanding The Gift of Life.