Humfeld 1

Elyssa Humfeld
Prof. Fong
English 1T
18 June 2016
Dont Look Down on Down Syndrome
After hearing the word Down syndrome, many people who dont know about it tends to
think it is a negative condition. Some people even believe it is an illness, not a condition.
Especially people who are expecting a child with Down syndrome are scared to have the child.
About 90% of women terminate their child when they find out they have Down syndrome. Down
syndrome people are wonderful to have around and make others around them happy. Most
families with a person who has Down syndrome say their family has become happier with them.
Although it is much better now than it was before, some parents out there say they are not told
enough information about Down syndrome. Some say they were told more negative information
than positive information, which is what they prefer to hear.
It is very difficult for mothers to hear the news of their child has Down syndrome. For
most it is shocking news and become devastated. My mother, whom I interviewed, has told me
this was a very difficult decision for her and the news was a shock to her. Most mothers always
expect their child to be born healthy and dont expect them to have any kind of condition. What
mothers expects to hear after hearing the news their child will have Down syndrome is what she
should expect if she were to keep the child. But most mothers say they dont receive enough
information from their physician. Even my mother told me their genetic counselor gave them
very little information. In the article, Mothers of Children with Down Syndrome Reflect on Their
Postnatal Support, author Brian Skotko talks about the research of how many mothers received
enough information and whether the physician was supportive of them or not. The researchers
sent surveys to those with Down syndrome people answers the questions they have been
given.

Humfeld 2
About 1 out of every 800 to 1000 infants are born with Down syndrome, which is about
5000 parents receiving the diagnosis of their child each year. From a survey of 1126 mothers
with Down syndrome children say that about 87.5% still receive the news postnatal. Mothers are
usually not offered prenatal testing until they are 35 or older. Some mothers dont do prenatal
testing due to religion or personal reasons. Whether parents find out about their childs
diagnosis before or after birth, their physician has to break the news to them. The article says
researchers have been studying how physicians deliver the news of postnatal diagnosis of
Down syndrome since 1964. A survey given in 1976, 414 mothers of children with Down
syndrome responds indicating, ~40% of respondents thought that they have been given
inadequate, abrupt, or unsympathetic information by their physician when their child was
diagnosed wit DS, (Skoto). In another survey in 2004 with a response from 467 of mothers,
majority of mothers strongly disagree, however, with the idea that their physicians had supplied
enough up-to-date information on DS or an adequate number of telephone numbers for parents
who already had a child with the condition, (Skoto). This is one of the big problems most
parents have because of course they want to know more about their childs condition. When
they arent prepared because of the lack of information, they would become more scared for
their childs future.
Another problem most mothers have were what kind of information they were given,
majority of mothers though that, when their physicians talked about DS, they neither talked
about nor emphasized the positive aspects of the condition, (Skoto). The mothers already think
negatively about the news, of course they would want positive news. And the thing is that Down
syndrome is not a bad condition. It would be a bit more difficult to raise than a child without
Down syndrome but it isnt a negative condition. About one half of mothers have said their
physician emphasized more on the negative aspects of Down syndrome. In 1994, a mother who
has a Down syndrome child reported, [The physician] told my husband that [my child] would be
mentally retarded and never be able to make change for the bus, (Skoto). Another mother in

Humfeld 3
1977 said, My physician told me that my child would never walk, talk, or function normally,
(Skoto). These are of course false information that was given to these parents. Some mothers
were told to get rid of their child and announced that he died and then to move on to have more
children. It was more common back then because most people, even the physicians, though
Down syndrome is a bad condition. No mother would want to hear from other people to get rid
of their child. Based on all the responses from different mothers, it appears their physician puts
in their own personal opinion on what the mother should do for their child.
There were mothers who werent told of their child's condition right away. Some
physicians would avoid mothers when they suspect the child has Down syndrome. Some
mothers thought the medical staff members would make any excuses up to help delay telling
the information. Sometimes the physicians would tell anyone else except for the mother and
have that someone else to tell the mother the news instead. Some mothers thought they found
out about the news too quickly. A mother complained saying a mother should find out their
childs condition a few seconds after a delivery. There were also angry reports from most
mothers that they overheard the staff talking about their childs condition before they were
informed directly.
There were also complaints from mothers that they were told of the diagnosis without the
presence of their partners. This isnt news for just the mothers but fathers as well. They should
be informed together and this is also helps support the mother when hearing this news. A
mother in 1981 said, When I told her I had to call my husband, she criticized me for possibly
endangering his drive to the hospital to be with me, (Skoto). Or even the other way around,
from a mother in 1999, What frustrated us was a doctor should have talked to us, both of us, in
my room instead of my husband hearing it from the nurse and then having to tell me, (Skoto).
Even the way the physician tells the mothers the news makes them feel bad. Some mothers
said they were told in a way to make them feel guilty and that it was a regrettable happening.
Even a nurse compared a mothers child with a doll explaining they are the same with was

Humfeld 4
nothing. The materials the physicians give the mothers arent all up-to-date. A mother in 1995
was given a book about Down syndrome from 1960. Even mothers today arent given enough
information and have to go to other sources to find more information. Physicians need to be
taught how to given information to mothers and not just about Down syndrome but any kinds of
condition.
Due to the lack of knowledge most mothers have on Down syndrome, the rates of
abortion have been high for decades. In the article, The Inadequacy of Choice: Disability and
Whats Wrong with Feminist Framings of Reproduction, author Alison Piepmeier, who has a
daughter with Down syndrome, talks about the comments she has gotten on an article that
shares her experience. She says, Our cultural expectation is that pregnant women have
prenatal testing performed so that they can make the choice to terminate pregnancies with
defects. Down syndrome is a condition for which much prenatal screening and testing are
done, and up to 90 percent of fetuses identified as having Down syndrome are terminated,
(Piepmeier). Which means only 10% of mothers dont terminate their child when they learn their
child has Down syndrome. Most people who read her article have commented that they would
accept abortion as an option and they would put abortion themselves. One of the comments she
received was, I was raised to believe that knowingly giving birth to a severely disabled or
mentally retarded baby was a sin--a really terrible sin--because it harmed not just the baby (who
would never have a normal life) but also the family (including siblings who would be pressed into
caring for an aging disabled brother or sister, no longer cute in their 50s) and society (stuck
with enormous bills for a lifetime). I still feel that way. Hopefully in time, that 92% [of fetuses with
Down syndrome that are terminated] will become 100%, (Piepmeier). The problem with most
people is that we are not given enough information from the beginning of what Down syndrome,
or other conditions are really about. I remember in high school biology class, I found a page
about Down syndrome but it was only one paragraph describing what it is about. There were
also other conditions about genetics but they werent fully described. Although the schools dont

Humfeld 5
have to teach the conditions to us, they should make us more aware of the subject. I feel as
though we arent aware of it enough. Even I wasnt even aware of it till my brother was born.
In an article, Chloes Law: A Powerful Legislative Movement Challenging a Core Ethical
Norm of Genetic Testing, author Arthur L. Caplan talks about a Pennsylvania Law call the
Chloes law. A child with Down syndrome named Chloe Kondrich, whose father was shocked of
the amount of mothers who terminate their child when they learn of their diagnoses. This law is
to make sure mothers are to receive positive information of Down syndrome since majority
terminate due to the lack of information. This puts disability in a positive light and abortion in a
negative light, (Caplan). This could help reduce the amount of abortions and help mothers see
Down syndrome is not terrible, as it seems. There are some myths about Down syndrome
people hear about and they believe it. For example, Down syndrome wont be able to live a
normal life or wont be independent.
There have been cases where kids with Down syndrome have normal or mildly delayed
developments. The article, Fetal Therapy for Down Syndrome: Report of Three Cases and a
Review of the Literature, author Patrick James Baggot and Rocel Medina Baggot writes three
case reports of the development on Down syndrome kids. All three of the mothers in these
cases have taken medication with vitamins in it while they were pregnant. They would also read
or sing to their child during the pregnancy. All of these mothers continued to read to their kids
everyday for a certain amount of time and exposed them to music. In case one, From birth to 8
months, the baby received a yoga-based passive movement simulation program. He also
received a broad educational program in the style of Glen Doman and colleagues, starting at
birth. Reading and flashcards began at 6 months. The mother read five to 15 books per day to
her child. Counting on fingers and math flash cards began at 8 months, (Baggot). The child was
then able to read and respond to gestures by the time he was 19 months. At 35 months, he
could read a kindergarten-level book. For a child with Down syndrome, he was able to develop
quickly compare to most Down syndrome kids which is slower than kids without Down

Humfeld 6
syndrome. If mothers were given the proper information of Down syndrome, there is a chance
that most of the Down syndrome population can develop just the same as any child without
Down syndrome.
Although Down syndrome is a condition no one should be afraid of, there are things that
parents should be aware of if they are expecting a child with Down syndrome. People with
Down syndrome are more likely to have health issues. The article, Down Syndrome. (A New
Age for Childhood Diseases), author Cindy Finesilver talks about most of the health issues
Down syndrome people are more likely to have than people without. One of the commonly
problems they can have are cardiac problems. About 30% to 60% of children with Down
syndrome are to have heart defects. Before, some children after birth would die because of the
heart defects but now we are able to surgically correct the problems. Down syndrome people
could have muscle, bone abnormalities. These dont cause significant alterations in functions,
but problems can emerge in adulthood. Their vertebral bodies can become displaced and they
can develop arthritis in their spine. Down syndrome people have a risk of thyroid dysfunction.
They are at a risk for hyperthyroidism and hypothyroidism. 10% to 40% of patients have
hypothyroidism. They can have more problems with hearing and vision. About 70% of Down
syndrome people have conductive and/or sensor neural hearing loss. This leads for them to go
visit the doctors more often to have their eyesight and hearing checked. Down syndrome are
also able to have depression, they are emotional just like any other person without Down
syndrome. When they do have depression, they arent as function as they normally are. About
5% to 10% can have seizure disorders. They can also have Alzheimers which can be tough to
diagnose. Sleep apnea is also a big problem and almost half of people with Down syndrome
have sleep apnea. Since Down syndrome have higher risks with these health issues, you do
need to visit the doctors for them more than those without Down syndrome.
Down syndrome has so much more opportunity now than they have before. Even more
people with Down syndrome are able to graduate high school, take college classes, get married

Humfeld 7
and have good jobs. In the article, Life with Down Syndrome is Full of Possibilities, author Liz
Szabo starts with the article by talking about Tim Norton who has a daughter with Down
syndrome. Tim Norton was devastated when his daughter was diagnosed with Down syndrome
shortly after her birth in 2006. He envisioned her growing up tragically disabled. The years
ahead seemed filled with darkness, (Szabo). Norton met a girl with Down syndrome one day
named Melissa Joy Reilly. After meeting her, Norton started to feel more positive because he
saw her skiing very well. This brought him in the more positive light rather than the negative.
People with Down syndrome now are able to live to about 60 years old, before they would live to
about 25 years old. There are many successful Down syndrome people, 36-year-old named
Karen Gaffney, will receive an honorary doctorate from Oregons University of Portland.
University officials believe she maybe the first person with Down syndrome to receive such a
degree, (Szabo).
Down syndrome isnt negative as most people make it seem like. We arent all informed
enough about any condition that arent negative at all. People dont like it when others are
different but I think different is good. My mother told me in the interview that although it takes
longer for her son to be able to do things other kids his age can do, it feels like twice the reward
when he does it and twice the excitement.

Humfeld 8
Work Cited

Baggot, Patrick James "Paddy Jim", and Rocel Medina Baggot. "Fetal therapy for Down
syndrome: report of three cases and a review of the literature." Journal of American
Physicians and Surgeons 19.1 (2014): 20+.Academic OneFile. Web. 14 June 2016.
Caplan, Arthur L. "Chloe's Law: a powerful legislative movement challenging a core ethical norm
of genetic testing." PLoS Biology 13.8 (2015). Academic OneFile. Web. 14 June 2016.
Finesilver, Cindy. "Down syndrome. (A New Age for Childhood Diseases)."RN Nov. 2002: 43+.
Academic OneFile. Web. 14 June 2016.
Piepmeier, Alison. "The Inadequacy of 'Choice': Disability and What's Wrong with Feminist
Framings of Reproduction." Feminist Studies 39.1 (2013): 159+. Academic OneFile.
Web. 14 June 2016.
Skotko, Brian. "Mothers of children with Down syndrome reflect on their postnatal support."
Pediatrics Jan. 2005: 64+. Academic OneFile. Web. 14 June 2016.
Szabo, Liz. Life With Down Syndrome is Full of Possibilities. USA Today. USA Today, 9 May
2013. Web. 25 May 2016.