1. (Author, National Leadership Local Support, 2015) What Is Down syndrome? Down syndrome occurs
when there is one extra copy of chromosome 21 in cells in the body. Down syndrome is one of the most
common congenital chromosomal abnormalities named after the person who first described it. Dr. John
Langdon Down, was a doctor in London and in 1866, he was the first person to accurately describe the
syndrome, which today bears his name.
(Author, National Leadership Local Support, 2015) There are three types of Down syndrome; Trisomy 21
(95%) extra number chromosomes in every cell, Translocation (3-5%) extra chromosome 21 is attached
to another chromosome in every cell, and lastly Mosiac (1-2%) mixture of cells, some with an extra
chromosome 21 and normal cells. In order to know which form of Down syndrome your child has, a
chromosomal analysis is carried out (by blood tests) to confirm the diagnosis.
About 1/100 cases of Down syndrome may be inherited. It is a lifelong condition and cannot be cured.
Approximately, 47% of children with Down syndrome will have a heart condition. Between 40 and 60%
of babies with Down syndrome have congenital heart defects. A congenital heart defect is a abnormality
in the structure of the heart, which is present from birth. The most common defect is complete
atrioventricular septal defects (AVSD). The majority of congenital heart lesions in Down syndrome can
be successfully treated,either medically or surgically. There are many different types, ranging from fairly
‘simple’ defects to complex problems involving all four chambers of the heart. Two patients with the
same defect will not necessarily show the same symptoms.
Having Down syndrome does not guarantee any medical condition. Most children with Down syndrome
are healthy and active and will benefit from a variety of opportunities just like the other children in the
family. However,children with Down syndrome have a higher incidence of many treatable health
problems.
(Author, March Of Dimes, 2015) About 12% of babies with Down syndrome are born with intestinal
malformations that require surgery.
More than 60% of children with Down syndrome have vision problems, including crossed eyes
(esotrophia), near or far-sightedness, and cataracts. Glasses,surgery,or other treatments usually can
improve vision. A child with Down syndrome should be examined by a pediatric ophthalmologist within
the first 6 months of life and have regular vision exams.
About 75% of children with Down syndrome have some hearing loss. Hearing loss may be due to fluid in
the middle ear (which may be temporary) and/or defects involving the middle or inner ear. Babies with
Down syndrome should be screened for hearing loss at birth and again during the first months of life.
They also should have regular hearing exams so any problems can be treated before they hinder
development of language and other skills.
(Author, March Of Dimes, 2015) Children with Down syndrome tend to have many colds and ear
infections, as well as bronchitis and pneumonia. These children should receive all the standard childhood
immunizations, which help prevent some of these infections.
(Author, March Of Dimes, 2015) About 1% of babies with Down syndrome are born with congenital
hypothyroidism, a thyroid hormone deficiency that can affect growth and brain development. It can be
detected through newborn screening tests and treated with oral doses of thyroid hormone. Children should
be tested yearly.

2. (Author, March Of Dimes, 2015) Fewer than 1 in 100 children with Down syndrome develop Leukemia,
a blood cancer. This can be treated through Chemotherapy.
(Author, National Down Syndrome Society, 1979) One in every 691 babies in the United States is born
with Down syndrome. There are 400,000 people living with Down syndrome in the United States. Down
syndrome occurs in people of all races and economic levels. The incidence of births of children with
Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women,
80% of children with Down syndrome are born to women under 35 years of age. Life expectancy for
people with Down syndrome has increased dramatically in recent decades-from 25 in 1983 to 60 today.
(Author, National Down Syndrome Society, 1979) A few of the common physical traits of Down
syndrome are low muscle tone, small stature, an upward slant to the eyes,and a single deep crease across
the center of the palm. Every person with Down syndrome is a unique individual and may possess these
characteristics to different degrees or not at all.
Now that I have all my facts about Down syndrome, I came across a very interesting story that I would
like to share. I have a friend and her name is Brandie. She has a 3 year old little girl named Mady, with
Down syndrome. I asked her if I could ask her some questions about Down syndrome and she happily
accepted.
Me: Can a Mady go to school?
Brandie: Yes,children with Down syndrome can go to school. Mady is starting the new 2015/2016 school
year at Lewis & Clark. She is able to attend school earlier because she is special needs, and to get a jump
start on learning. She will be in a small class setting 10-12 students with 2 teachers,one of them being a
Special Ed teacher. She will NOT have a para, or one on one assistant. She will basically be treated just as
any other “typical” child. (Typical is the term used for kids who do not have special needs)
Me: What can a Mady do/not do?
Brandie: A child with Down’s (Down syndrome) can do most of the same things any typical child can do
depending on their health. Each child is different, there is NO scale that determines severity. Children
with Down’s have weaker muscle tone and therefore it’s more dangerous for them to play certain sports,
but doesn’t limit them from playing. They just have to be checked out by Dr. and cleared for the sport.
Me: What is your family’s daily routine?
Brandie: Our daily routine is just like anyone else’s. We get up and get ready for the day. Mady likes
brushing her teeth and insists we “brush, brush”. She likes getting her hair brushed and put in a pony and
replies, “sooooo pretty”. She throws her dirty diapers away after changing and we praise her for doing a
good job. We get in the car and head to the sitters. Mady points out all the places she recognizes during
the ride. She points out certain neighbor’s houses and says their names. She yells for her daddy when we
drive by daddy’s work. When we get to the sitters, she makes sure to hug and kiss me bye bye. My super
outstanding sitter was a daycare provider for years and does all the things you would do in a daycare such
as paint, glue, and use scissors. She lets Mady wash dishes/water play and they have story book time etc.
Mady says, “She has the best nana Rosie in the world”! After work, I pick the girls up and we go home
and play outside “in the summer” until the sun goes down. Playing consists of sliding, swinging, and
splashing in her kiddie pool. She recently learned how to pedal her tricycle (We’re super excited!). She
loves her bubble machine, just stuff that all kids love. We all eat dinner at the same time, the only
difference is Mady’s is prepared differently. We wrestle around for a little bit at night, then bath time, and

3. lastly, we tuck Mady in bed for the night. Mady has her own room and sleeps in her crib most nights, she
only sleeps with us because daddy has her spoiled!
Me: What type of problems does Mady have, if any?
Brandie: Typical problems in people with Down syndrome is heart defects,which require surgery. Mady
did not have any complications with her heart and has never had surgery. Also, the sucking mechanism
that we are all born with, is weaker for Down’s because of low muscle tone. It’s very common for a
Down’s baby to have a feeding tube. Mady did not have this, she took the bottle, thankfully. The good
thing about the tube is, just because it was put in, doesn’t mean it has to stay there for life. I’ve included
the link below, very informational.
https://www.nichd.nih.gov/health/topics/down/conditioninfo/Pages/associated.aspx
Me: What type of Down syndrome does Mady have?
Brandie: Mady has Trisomy 21, the most common form of Down syndrome, caused by an extra copy of
chromosome number 21. I didn’t know Mady had Down’s before I gave birth to her. When the Dr. does
the blood work toward the beginning of your pregnancy, he/she are testing for a lot of different things.
Well, my results came back that I had a 1 in 20 some chance. My Dr. asked if I wanted to have an
amniocentesis, which I opted out. It didn’t matter to me, I would love my baby, regardless!
Me: How old is Mady?
Brandie: Madalyn is 3 years old. Her birthday is March 30th
and she was a c-section baby. I had a c-
section with my 1st
daughter, McKenna because I had a tumor on my right ovary. We didn’t know if it
was cancerous so I opted to have a c-section so the Dr. could check things out. Come to find out, it was

4. NOT cancer!! You can have a vaginal delivery after a c-section but I would’ve had to go to Omaha and
didn’t want too.
Me: Does Mady have behavioral problems?
Brandie: Mady doesn’t have behavioral problems yet…I don’t know that she’ll ever have them. That’s
another one of those things where everyone is different and she’ll be what she turns out to be. I’d say the
only behavioral problems she has now is she’s a little snot face sometimes. LOL, just like any little 3 year
old princess!
Me: How does Mady act around other children?
Brandie: Mady loves other children. She likes babies more though. She likes to rub their heads and face
and say, “nice”. She play with other kids by sharing and then being stingy.
Me: Is Mady a picky eater?
Brandie: Yes,Mady is a very picky eater. She doesn’t eat solids at all. She went to an 8 week feeding
program at Munroe Meyer in Omaha. That is where she learned to 1st
eat pureed food. Mady continues to
do an outpatient feed clinic 1x/week for an hour. They work on chewing with her but as of right now she
just swallows all of her food without chewing. This is why all her food have to be pureed.
Me: How does Mady interact with her siblings?
Brandie: Mady interacts with her sister, McKenna in a positive way. She likes to follow big sis around
and try to do all things she does. Of course McKenna gets annoyed, but not always. Mady likes when
sissy reads books to her, pushes her on the swing, and watch movies. They just play.
Me: What is Mady’s attention span like?
Brandie: Mady has a great attention span. We just recently started takin her to the movie theatre and she
does great! She can sit through the reading of a book and lay in bed at night with mom or dad and watch
the news. Of course,if something interesting gets her attention, she gravitates toward that.
Me: Is it more challenging or stressful at times caring for a child with Down syndrome?
Brandie: The most stressfulpart of taking care of Mady has been all the therapy appointments, whether it
be physical, occupational, or feeding. As stressful as it’s been at times, it was all worth the outcome.
Mady has succeeded in her therapy and has graduated from all of them except for feeding. Sometimes you
feel like, “Why did this have to happen to her”? You realize that you’re the one that was picked to help
her best! NOBODY could take care of my Mady like Mom, Dad,and Sissy!
Me: Tell me about your experience with having to pureed Mady’s food and about her just getting off the
bottle
Brandie: Taking Mady off the bottle was so much easier than I expected! I took it from her one day and
she never cried for it. She asked for it once in a while but I’d give her a sippy with milk. She now asks for
“milk”. I do purees 1x a week for a couple hours. I puree everything you can possibly think of, chicken,
pork, Salisbury steak, all veggies, fruits, and potatoes. EVERYTHING! It’s been trial and error with the
purees, you just figure it out. Did you know you can make a peanut butter and jelly sandwich and throw it
in the food processor and you’ll have puree peanut butter and jelly? This is one of Mady’s favorites and
she calls it “jelly”. She will eat yogurts with chunks of fruit in it, she can handle that texture. We have
even started fork mashing some foods and she will eat them.

5. Because Mady had a texture issue with food, she refused to eat solids. The
Bibliography
Author,N.(1979). NationalDown SyndromeSociety.Retrievedfromndss:
www.ndss.org/Resourses/Research/
Author,N.(2015). March Of Dimes. RetrievedfromMarchOf Dimes:
www.marchofdimes.org/baby/down-syndrome.aspx
Author,N.(2015). NationalLeadership LocalSupport.RetrievedfromDownSyndrome Ireland:
downsyndrome.ie/new-expectant-families/common-questions-about-down-syndrome/
8 week treatment got her to tolerate and eat pureed foods. We have been gradually increasing the textures
of food to move her along. Mady is now 2lbs heavier then she’s been in the past 2 years! She’s growing
healthy and also getting taller. She’s getting a wide variety of nutrition and for that I’m thankful.
Her food journey has been a struggle, I’ve cried thinking I’ve done something wrong and thought the
worst, like what if she never eats? This has been one of the hardest struggles in my life. Today, I’m
confident that Madalyn will pick up that cheeto and crunch it away, on her own time!
This is the end of the questions I have for Brandie. I thank her and Madalyn so much for being a part of
my paper. I’ve learned a great deal of information that will help me when I’m out in the field.
In conclusion, I have learned so many great things about Down syndrome and how it affects people
physically and mentally. One of the reasons I chose this topic is, I’m going into the health profession. My
major is Medical Assisting. I know someday in my future I will have to take care of a patient who has this
and I want to be readily prepared to do so. There are so many resources out there on anything you want to
know about. I just listed a few. With this information I have given, you can make a difference in a
person’s life just by reading the facts. That’s what makes this great!
Author,N.(1979). NationalDown SyndromeSociety.Retrievedfromndss:
www.ndss.org/Resourses/Research/
Author, N.(2015). March Of Dimes. RetrievedfromMarchOf Dimes:
www.marchofdimes.org/baby/down-syndrome.aspx
Author,N.(2015). NationalLeadership LocalSupport.RetrievedfromDownSyndrome Ireland:
downsyndrome.ie/new-expectant-families/common-questions-about-down-syndrome/