Down Syndrome is Not a Death Sentence By Nikki Spencer

Your baby has just been diagnosed in utero with having Down syndrome, and you are scared. Scared because everything you remember about Down syndrome as a kid wasn't pretty. Scared because of what your Doctor or Geneticist is telling you. Scared because of all you've read online, most of it negative, bad, and fatalistic.

Much of what is on the web today is outdated and inaccurate. Let's start dispelling these falsehoods right away.

"People with Down syndrome suffer." Nothing could be further from the truth. People with Down syndrome don't feel pain any more than anyone else. They have the same capacity as anyone to be happy; perhaps even more so. They generally have a high self-esteem, they achieve to the best of their ability; they are educable. They love and are loved. They go to college, work meaningful jobs, drive cars, marry, entertain, and teach us. They do not suffer.

"A person with Down syndrome won't walk, talk, or read." Again, not true. Some may have more difficulty than others with these skills, but the vast majority does these things and does them well.

"Down syndrome is a dreadful disorder." Total speculation and absolute opinion. Most parents of a child with Down syndrome would disagree wholeheartedly.

"Down syndrome people are stupid and stop learning around 5th grade." People with Down syndrome are not stupid. They are intellectually disabled, or mentally retarded. "Retarded" is defined as "slow or to go slowly". It may take longer for them to learn something, but learn they do. Some people with Down syndrome may find certain concepts difficult to grasp. Learning is a lifelong process. Many people with Down syndrome go to college. Could a 5th grader do that?

It is true that people with Down syndrome have more challenges concerning health and life skills, but this does not mean their lives are not pleasant and not worth living. Some Down syndrome symptoms to be aware of include congenital heart defects (usually repairable through surgery), congenital gastro-intestinal defects (also surgically repairable), hypotonia or low-muscle tone, speech difficulties, thyroid issues, dental problems, and musculoskeletal problems.

It's important to note that while there are many symptoms of Down syndrome, one person doesn't exhibit all of the symptoms. One child may have a heart defect, have hypotonia, and need shoe orthotics for foot support. Another child may be born with Hirschsprung's disease, need extra help with speech, and be delayed in walking until age four. Yet a third child may have perfect heart and bowels but need glasses and hearing aids. Every child is different.

Screening Tests to Detect Down Syndrome During Pregnancy By Soma Banerjee

Rapid urbanization and spread in education in women have one hand created a lot of progress in the society but in its wake some unwanted conditions have also surfaced. The major change has come upon the women of society who have progressed in leaps and bounds. This has increased the age for marriage in most of the urban household. Today getting married at 30 and having the first child after 35 is a common phenomenon. Though it has lot of advantages, one major disadvantage that has been seen, is to give birth to children with some or other physical or mental disability.

Although it doesn't happen all the time and to everyone yet the risk does increase...
The most common abnormality seen in late conception is Down Syndrome... it is the most common clinical cause of mental retardation in the world. It occurs once in every 1,500-2,000 births when the mother's age is below 25; one in every 400 births when the mother's age is over 35; once in every 40 births when the mother's age is over 45. A mother with a child with Down syndrome has a one-in-25 chance of recurrence.

Here I'll try to tell a little about the Syndrome and the tests that are available to detect Down Syndrome during pregnancy only.

The term Down syndrome is taken from the name of the English physician, Dr. John Langdon Down, who is credited with first describing the condition in 1866.The individuals with Down syndrome possess additional genetic material in their cells, usually an extra chromosome
Some of the physical characteristics observed in persons with Down syndrome include the following:

o The back of the head is often flattened,
o The eyelids may be slightly slanted,
o Small skin folds at the inner corners of the eyes may be present,
o The nasal bridge is slightly depressed, and the nose and ears are usually somewhat smaller.
o In the newborn there is often an excess of skin at the back of the neck.
o The hands and feet are small and the fingerprints are often different from normal children.
o Their muscle strength and tone are usually reduced.
o About one-third of children with Down syndrome have congenital heart disease.
Affect of Down Syndrome:
o All areas of development may be delayed in a child with Down syndrome.
o Poor muscle tone influences gross and fine motor development but this can be improved with physical therapy
o language development delays due to muscle problems which can be improved by language/speech therapy
o Since mental retardation is very common, higher integrative abilities such as the ability to think abstractly and to form concepts are likely to be affected.

With appropriate training, they can secure employment, often in the competitive job market, especially through supported work programs. Down syndrome affects kids' ability to learn in different ways, but most have mild to moderate intellectual impairment. Kids with Down Syndrome can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace - which is why it's important not to compare a child with DS against typically developing siblings or even other children with the condition.

Prenatal Screening and Diagnosis

It is suggested that if you are above 33 years of age at the time of your first pregnancy, do get these tests done to be free from any type of anxiety...

Two types of prenatal tests are used to detect Down syndrome in a fetus: screening tests and diagnostic tests. Screening tests estimate the risk that a fetus has Down Syndrome; diagnostic tests can tell whether the fetus actually has the condition.
Screening tests include:

o Nuchal translucency testing. This test, performed between 11 and 14 weeks of pregnancy,
o The triple screen or quadruple screen (also called the multiple marker tests). These tests are typically offered between 15 and 18 weeks of pregnancy.
o Integrated screen. This compares the blood test reports of first and second trimester.
o A genetic ultrasound. A detailed ultrasound is often performed at 18 to 20 weeks in conjunction with the blood tests, and it checks the fetus for some of the physical traits abnormalities associated with Down syndrome.
Diagnostic tests include:
o Chorionic villus sampling (CVS). The advantage of this test is that it can be performed during the first trimester, between 8 and 12 weeks. It carries some extra risk of miscarriage.
o Amniocentesis. This test, performed between 15 and 20 weeks of pregnancy, involves the removal of a small amount of amniotic fluid through a needle inserted in the abdomen. The cells can then be analyzed for the presence of chromosomal abnormalities. Amniocentesis carries a small risk of complications, such as pre-term labor and miscarriage.
o Percutaneous umbilical blood sampling (PUBS). Usually performed after 20 weeks, this test uses a needle to retrieve a small sample of blood from the umbilical cord. It carries risks similar to those associated with amniocentesis.

Although most of the parents after knowing that the fetus is suffering with Down syndrome go for abortion, I feel it's absolutely the parents choice to or not to go for Medical Termination of Pregnancy. Though it might cause them a little more effort to bring up their differently able child, it may be a real joy for them to see the kid growing up. These kids are any time more lovable and loving. They remain innocent all their life and THEY DO GROW UP AS ANY NORMAL CHILD MAY BE A LITTLE LATE.

So if you are a proud parent of a child suffering from Down Syndrome, Please don't take it as a curse but take it as a blessing from God!!! You do have a child to love and care rather than without a kid.

Down Syndrome - The Conflicts in Having a Down Syndrome Baby By Werner Knoepp

OLDER MOTHERS APPEAR MOST AT RISK

Down Syndrome occurs in one in eight hundred births in the U.S. About 5,000 children with Down Syndrome are born in the country annually. The general, conventional belief is that the incidence of this disorder increases with the mother's age, with less than a one in a thousand risk of a woman under thirty having a Down Syndrome baby. The risk is presumed to increase to one in twenty five for the 45 year old mother.

But the National Association for Down Syndrome points out that more current research shows that 80% of babies born with Down Syndrome are to women under 35 years of age! So this suggests very strongly that the mother's age will not determine the actual risk. A close review of current research statistics provides a convincing argument that simply looking at the mother's age will miss 75% of all Down Syndrome cases.

So much for statistics. We need to keep in mind that younger women are much more likely to get pregnant. This fact alone can skew all the statistics doctors are so fond of reciting. A very careful analysis of them brings us back to the original idea that older women have in fact, a higher risk, as individuals, of having a Down Syndrome baby.

TO ABORT OR NOT TO ABORT

The question every woman over 35 and contemplating pregnancy is faced with is; "should I consider screening?" And if the test comes back positive, it then comes down to the question of to abort, or not to abort. For some women, abortion is unthinkable. For others it can be a serious, gut wrenching conflict. Here are some facts every woman pregnant with a Down Syndrome baby needs.

• The chances of a lifelong dependency of a Down Syndrome individual are very good.A decided minority go on to become relatively independent adults. All, under the best of circumstances, have mild to moderate disabilities coupled with a wide variation in mental abilities and behavior.
• Associated health conditions are common. Heart, lungs, and gastro-intestinal systems are most often affected with congenital heart defects affecting 40% of these children. Leukemia affects these children 10 to 15 times more often than normal children.
• Bringing up a Down Syndrome child can be very stressful, and expensive.
• Mothers of Down Syndrome children generally outlive them.
• Nevertheless, Down Syndrome children are generally placid, non aggressive, and loving.
• Awareness of Down Syndrome is improving and the social and educational supports needed are becoming easier to find. Special nutritional needs for these children are becoming better understood as time goes on.
• Many mothers of these children are happy to have had them and support groups abound.

So whether or not to be screened is a decision that can only be made by the mother. And whether or not to abort a Down Syndrome fetus is another implacable decision to be made. Neither is easy.There is not a totally satisfactory answer to this dilemma. Whatever the mother decides, she is likely to have moments of regret forever after. The question needs to be thought out very carefully.

MITIGATING THE DISORDER

Down Syndrome, caused by a critical imbalance of certain enzymes can be mitigated to a great extent with a nutritional approach targeted to the disorder. Since there is no cure, every parent of a Down Syndrome child needs to take this fact under very serious consideration. A visit to an alternative physician familiar with the disorder would be a wise move.

Down Syndrome By Jamie Herold

Dr. John Langdon Down, born in 1828 and died in 1896, was the medical superintendent of the Royal Earlswood Asylum for Idiots in London. He studied what he termed Mongolian idiocy which was based on the measurements of the head and palate. This became a racial stereotype in that Asian descendants were called Mongoloids, but they are not directly related to Mongolian idiocy, now termed Down syndrome or Trisomy 21 (Ward, 2004).

More than six thousand babies with Down syndrome are born in the United States each year. Down syndrome occurs in all races, ethnic groups, socioeconomic classes, and nationalities. Genetics play a major role in Down syndrome. A person without Down syndrome has forty-six chromosomes, while a person with Down syndrome has forty-seven. This results from cell division, which is how the chromosomes divide between the sperm and egg, usually twenty-three for each. Down syndrome is determined by looking at a karyotype or a picture of chromosomes after cell division is complete. Chromosomes can be taken through amniotic fluid, usually done by an amniocentesis. Down syndrome is characterized by looking at the twenty-first chromosome which has three chromosomes instead of two, thus called Trisomy 21 (Stray-Gundersen, 1995). Persons with Down syndrome have many different physical characteristics, such as low muscle tone, small facial features, a protruding tongue, smaller head circumference, short stature, and small, webbed hands and feet.

My research is based on the social-conflict theory because society fears what they do not understand, therefore, conflict arises within the socialization of a person with Down syndrome. My hypothesis is that society has a negative perspective of individuals with Down syndrome. For my research, I distributed twenty open-ended questionnaires to ten males and ten females of an all Caucasian population. The total population had ages ranging from twenty years to sixty years. Approximately one-third of the population studied came from Peoria, Illinois. Close to one-third of the population resided in cities south of Peoria, Illinois and roughly another third of the population I chose lived just north of Peoria, Illinois. The majority of my subjects had some college education, while a portion had a high school diploma and a few had a college degree. Annual household incomes ranged from zero to twenty-five thousand dollars to more than sixty-five thousand dollars with the majority earning over sixty-five thousands dollars a year. Of the twenty subjects, there were various religions reported, such as Methodist, Catholic, Presbyterian, and Lutheran, nondenominational Christian. I did not find any correlations between the residence, education, income, or religion of my subjects and Down Syndrome. Over half of the subjects studied knew one or more persons with Sown syndrome, while seven said they did not know anyone with Down syndrome.

I did discover that the majority of females tend to be more passive and positive about Down syndrome, whereas most of the males had more realistically, yet negative comments related to Down syndrome. Age did play a factor in my research in that the subjects, age twenty to forty-five, have less knowledge about Down syndrome. Eleven people said that the maternal age of a newborn with Down syndrome is over thirty-five years. I found that the more personal experience an individual has with Down syndrome, the more knowledge they have about this defect. The frequency of babies born with Down syndrome is based on the mother's age at delivery. At the age of twenty-two, the estimated risk is 1/1065. At the age of thirty-five, the risk is 1/274. This does not mean that only women thirty-five and older have babies with Down syndrome. In fact, seventy percent of babies with Down syndrome are born to mothers under thirty-five. This is because women under age thirty-five have more babies than women over thirty-five (Stray-Gundersen).

Fourteen individuals reported that a person with Down syndrome should live with their family because the family is where the support and love are. On the other hand, six of the fourteen also stated only if the parents give the person with Down syndrome love, or only if at all possible, or only if the parents want to care for the child with Down syndrome. Overall, the results were eighteen out of twenty people surveyed did not feel that a person with Down syndrome could live independently.

I asked all twenty subjects if they had heard of any stereotypes related to Down syndrome. Nine, who were mostly females, said no to this question. Eleven persons gave detailed stereotypes and discriminating words that refer to Down syndrome individuals, such as stupid, retarded, handicap, dumb, ugly, weird, slow, mongoloid, and dependent. They also stated that they all look alike, they have smaller brains, and they have shorter life spans. More than half of the subjects said that a person with Down syndrome is equal to them instead of slower. Individuals with Down syndrome have mental retardation. This means that they learn slower than the average person. Intelligence is measured by using standardized tests that result in a score often computed into a measurement called an intelligence quotient or IQ. Among the general population, there is a wide range of measured intelligence. 95 percent of the population have a normal intelligence with IQs ranging from 70-130. Two and a half percent of the population have superior intelligence with IQs ranging over 130. And two and a half percent have an IQ of less than 70 or below the normal intelligence. There are three different degrees of mental retardation. A person with severe mental retardation has an IQ range of 25-40. Moderate mental retardation means his IQ si between 40-55 and mild mental retardation has an IQ that falls in the 55-70 range. Most people with Down syndrome score in the moderate to mild range of intelligence (Buckley,2004).

I asked the subjects how they feel about working with a person with Down syndrome. My results were fairly equal in both positive and negative aspects. Eleven subjects stated they would be fine, while nine explained that it would be alright as long as the person with Down syndrome is capable of performing the job requirements. The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities, such as Down syndrome, and operates that same as other federal laws that forbid racial, religious, age, and sex discrimination. The ADA declares that no employer can discriminate against a qualified individual solely because of a disability. This does not mean that employers are required to hire people with disabilities
(Buckley, 2004).

I found that fourteen people, mostly females, explained that a special education program would benefit a child with Down syndrome because they are able to learn at their own speed whereas in a regular classroom a child must learn rather quickly. Until the middle of the nineteenth century, children with Down syndrome were excluded from public schools and sent away to institutions. In the 1960's, federal, state and local governments provided educational opportunities to children with Down syndrome. The Individuals with Disabilities Education Act (IDEA), enacted in 1975, improved educational opportunities the most for children with Down syndrome. This act allows a "free" appropriate public education which includes all states. "Free" means that all parts of the child's special education programs will be provided at the public's expense, regardless of the guardian or parents ability to pay. The IDEA requires that children with disabilities be educated in the least restrictive environment to the maximum extent appropriate. The IDEA also requires all states to begin special education services at age three. A diagnosis of Down syndrome is enough to establish eligibility for IDEA. To qualify for this program, there must be a medical diagnosis or a 30 percent or more delay in one of the developmental stages. Mainstream and Inclusion are terms used for the practice of involving children with Down syndrome in regular school and preschool environments as if they did not have a disability. Early intervention provides therapies and other specialized services to lower the effects of Down syndrome that can delay early childhood development. Some examples of professionals that help families of Down Syndrome children are physical therapists, speech and language therapists, occupational therapists, and mental health professionals (Stray-Gundersen, 1995).

I found that almost all of the subjects said that a newborn with Down syndrome should be able to receive health and life insurance because of health related medical concerns. A few people stated that because of the shorter life expectancy, life insurance should not be denied because the family of a person with Down syndrome would need that money for expenses after that person dies. On the other hand there were two subjects that agree with the reasoning behind health and life insurance denial for persons with Down syndrome. They stated that it would not be profitable to society because money runs the world. Insurance is a major concern of families who have a member with Down syndrome. Finding and maintaining health insurance is difficult due to medical concerns at birth and during adulthood. In the past, medical problems associated with Down syndromes resulted in short life spans and premature deaths. Some medical concerns that might occur in conjunction with Down syndrome are heart defects, digestive problems, vision, hearing, orthopedic, and dental concerns, seizures, and leukemia. Approximately forty to forty-five percent of babies with Down syndrome have heart defects. Ten to twelve percent have some type of congenital malformation of the digestive system. Seventy percent of children have some form of vision problem that requires correction. Forty to sixty percent of children with Down syndrome acquire a hearing loss. Ten percent of children and adults have a orthopedic condition called atlantoaxial instability, which causes the upper vertebrae to bend the spinal cord causing serious injury. Leukemia occurs fifteen to twenty times more in a Down syndrome person than in the average person. Medicare, a federal health insurance program, and Medicaid, a state funded program may be available to help with medical costs for those who qualify. In the early 1930's, the estimated life expectancy of a person with Down syndrome was nine years mainly because of heart defects that could not be cured. By 1990, medical care had improved which increased the average life expectancy to thirty years. Today, persons with Down syndrome are expected to live a healthy, fulfilling life beyond fifty years of age (Charbonneau, 2002).

Could a person with Down syndrome become president of the United States of America? Two-thirds answered no. The following were some of their explanations: a person with Down syndrome would not understand what goes on in the world; society is much too critical; this person would not have enough support to run for office; no one would vote for him/her; te average person could not become president; they are incapable of performing the job requirements; and it would be too stressful and too much for them to handle.

Should a person with Down syndrome be able to receive social security income? Ten people said yes because they need it for medical needs and to put toward their future living expenses. Six people stated yes, only if the person has contributed to the collection of social security. Two people said yes if they are disabled and not able to work, otherwise they should receive it like everyone else. The current social security system works like this: when you work, you pay taxes into social security. The tax money is used to pay benefits to people who already have retired, people who are disabled, dependents of beneficiaries, and survivors of workers who have died. The money paid in taxes is not held in a personal account. Any unused money goes into the social security trust funds. A wide variety of federal, state, and local programs offer financial assistance. These programs are provided by the Social Security Administration. Supplemental Security Income (SSI) pays monthly checks, based on assets and income to children and adults with serious disabilities. Social Security Disability Insurance (SSDI) pays a monthly check to adults disabled from work and whose disability began before age eighteen (Stray-Gundersen, 1995).

Should a male and female, both with Down syndrome, have children together? Thirteen responses were yes, but these answers included restrictions, such as the following: if they are capable; if they are in love; depends on the severity of the Down syndrome; if they live on their own; if they understand the consequences; and chances are they will have a normal child. Six individuals said they were neutral about the situation and one person reported that from her experience, males cannot produce offspring. The fact is that males with Down syndrome cannot have children of their own due to lack of or low sperm count. Most women with Down syndrome are fertile, but their eggs are likely to carry the Trisomy 21 chromosome (Stray-
Gundersen, 2004).

In conclusion, I am confident that my hypothesis succeeded and hold true. My research indicates that an individual will associate with a person with Down syndrome if necessary or required. The majority of individuals studied explained that a person with Down syndrome is isolated from society caused by stereotypes, family protection, and limited knowledge about Down syndrome. Although in many countries, the lives of children and adults with Down syndrome are slowly changing, we still deny equality for those with disabilities.

If I would have had a few more months to research and interview, I believe I would have more positive and negative results. Maybe I would have been able to observe children with Down syndrome in a school setting or child care center. It would be great to participate in a harmless study.

References

Buckley, Sue. 1996-2004. Living with Down Syndrome. Portsmouth, U.K.: The Down Syndrome Educational Trust.

Charbonneau, Nicolle. March 2002. Down Syndrome Life Expectancy Doubles.
Health Scout News.

Stray-Gundersen, Karen. 1995. Babies with Down Syndrome: A New Parents' Guide. 2d ed. Bethesda, Maryland: Woodbine House, Inc.

Looking At Metabolism in Children with Down Syndrome by: Jane Orville

Research suggests children with Down syndrome have a lowered Basal Metabolic Rate, which is the rate a person burns calories for fuel when completely at rest - or sleeping. This means that children with Down syndrome use less energy when they are resting or sleeping.

Let’s look at an example. If you child is with a “normal” peer and eats the same amount of food and does the same activities, he will burn up to 15% fewer calories than his buddy. This means that his body has calories left over. Even 50 calories extra a day, a simple apple, will add up to 5 pounds a year. Take that over 5 years and you have an extra 25 pounds.

There are three ways to adapt for this difference in metabolism:

• Increase activity

• Limit calories

• Increase activity and limit calories.

Beginning with a focus on physical activity has many more positives. A person can choose from a variety of aerobic activities that are enjoyable. Additionally, regular aerobic activity has many health benefits: increased muscle tone, decreased resting heart rate, decreased blood pressure, a sense of well-being , better sleep, and an increase in metabolism.

Ideas for adding aerobic activity:

• Park farther away from where you are going

• Take the stairs instead of the elevator. My son and I are often seen taking the stairs up and the elevator down -- many times.

• Walk or bike to activities that are in your community.

• When you go to the park, play "tag" for 10 minutes with the kids. Don't catch them, just chase them around. Parents think of swinging and climbing the play structure as being active. It's not aerobic activity, except when running between structures.

It is important that the person with Down syndrome makes the choice of activity and is involved in setting the goals. The important part is to keep moving and have fun!