Down Syndrome, Prenatal Testing, and Changing Perceptions of Down Syndrome
People with Down Syndrome, once institutionalized and marginalized, gained acceptance and became fully recognised members of society in the 1970s. But the population of people with Down syndrome may be decreasing due to high abortion rates.
Although, according to some studies, there is a rise in the number of Down Syndrome births in the US, the fact that maternal age is on the rise should indicate an even higher incidence of Down Syndrome births.
Down Syndrome - Young Lady With Down Syndrome Enjoys the Great Outdoors
(photo by Dolores Monet)
History
In 1866, Dr. Langdon Down, a Brittish doctor, identified similar characteristics of certain individuals with mild to moderate developmental disabilities. A low nasal bridge, epicanthic eye folds, poor muscle tone, and cognitive impairment all appeared in the syndrome. The condition came to be known as Down Syndrome, while the general population often used the term 'mongoloid.'
In 1959, Dr. Jerome Lejeune found that people with Down Syndrome all had 47 chromosomes instead of the usual 46, or an extra partial or complete 21st chromosome. Down Syndrome became also known as Trisomy 21.
People with Down Syndrome have a higher incidence of congenital heart defects, leukemia, hypothyroidism, and early onset Alzheimer's disease than the general population. Individuals with Down Syndrome are known for their sunny dispositions, stubbornness, and high sociability.
In the past, a large proportion of babies who were identified as having Down Syndrome were institutionalized at birth. The so-called tragedy of having a child with Down Syndrome often induced doctors to suggest that parents institutionalize their children and forget about them. People looked askance at those families who chose to keep their children at home.
Life expectancy for a child with Down Syndrome was short. Infections and respiratory ailments (common in patients with Down Syndrome) were not addressed aggressively. The sick children were basically allowed to die, considered, as they were, substandard humans.
Down Syndrome - Okay, so she can't drive a car, but she can pilot a boat!
(photo by Dolores Monet)
Acceptance and oppurtnity
The 1970s brought a new culture of toleration and acceptance of people with disabilities. Institutionalization, once the norm, was seen as a cruel and pointless move. Parents whose children received the diagnosis of Down Syndrome were told to take their children home and love them.
Support groups sprang up. Parents and their children with Down Syndrome met to share medical information, therapies, and emotional concerns. Strategies were developed to address the specific developmental differences of children with Down Syndrome. Physical and occupational therapies, devised to enhance the abilities of the children turned these support groups into educational models.
People with Down Syndrome were suddenly seen as 'trainable' and 'educable.' Children guided with simple instruction to increasingly more complex instruction showed capabilites previously ignored. Many children with Down Syndrome were able to learn to read! While reading achievements did not advance beyond an elementary school level, children with Down Syndrome could read simple books, signage, uncomplicated reading material, and forms.
In 1975, the federal government passed the Education for all Handicapped Children which mandated a free, public education for many children who had been kept out of the educational system. Children with Down Syndrome were not allowed to attend school. Segregated into Special Schools, children with Down Syndrome were taught arithmetic and reading. they learned to perform simple tasks that would enable them to land jobs and to lead fulfilling lives.
Later, the federal government passed the Individuals with Disabilities Act which forced local public schools to guarantee individual appropriate education for students with physical and mental impairments, a practice commonly known as mainstreaming.
In the 1980s, a popular TV show called Life Goes On featured a character named Corky (Charles Thatcher) a teen-aged boy with Down Syndrome, played by the actor Chris Burke. Corky's adventures with every day life, his struggles and achievements granted a new status to people with Down Syndrome. Corky was played by an actor with Down Syndrome. People loved Corky. Finally, people with Down Syndrome were seen as human beings with the same ideals, values, emotions, strengths, and weaknesses as everybody else.
Medical strategies evolved that increased the life expectancy of people with Down Syndrome. Rigorous medical intervention ensured improvements in the general health of people with Trisomy 21. People with Down Syndrome's time had come. Finally, they were recognized and allowed to blossom to a full potential.
Down Syndrome - Young Lady With Down Syndrome Running
(photo by Dolores Monet)
Prenatal Testing
Around the same time, the development of prenatal testing made it possible to screen for Down Syndrome in a fetus.
A woman of 45 has a 1 in 25 chance of conceiving a child with Down Syndrome while a 25 year old has a 1 in 1100 chance. These statistics might suggest that more older women carry children with down Syndrome. However, as more young women have children at a higher rate than older women, more younger mothers actually have pregnancies resulting in Down Syndrome.
Amniocentesis in the 1st trimester of pregnancy, predicts Down Syndrome with a 95% accuracy. Fetal tissue samples in the 15th - 20th week of gestation is recommended for pregnant women 35 and older.
Chronic Villus Sampling takes tissue from the placenta to check fetal chromosome abnormalities at the 10th - 12th week of gestation with a slightly lower risk of miscarriage than Amniocentesis.
Maternal serum screening in which the mother's blood is checked for certain markers, measures particular hormones and proteins apparent in a Down Syndrome pregnancy.
In 2007, the American College of Obstetricians and Gynecologists recommended that all women, regardless of age be screened. When a diagnosis of Down Syndrome is apparent, despite society's new culture of acceptance, abortion is recommended.
Being opposed to abortion is no reason to avoid prenatal testing. The early information provided by prenatal testing can prepare parents for the birth of a child with Down Syndrome. They can meet people with Down Syndrome, familiarize themselves and become comfortable with the disability. They can educate themselves and the family about Down Syndrome.
The baby with Down syndrome will be welcomed with immediate acceptance, born into loving arms of a family fully willing to devote themselves to ensuring a quality life for their child.
Eugenics
A generation ago, children with Down Syndrome were institutionalized and segregated fro society. Their medical needs were often ignored. the success of early intervention, aggressive medical treatment, and the advance of educational opportunity turned what once was called a tragedy into a mere challenge. People with Down Syndrome came to be recognised as functional, complete human beings.
Down Syndrome, for a time, became almost fashionable and children with Down Syndrome were popular to adopt. Certain symptoms of Down Syndrome were recognised and appreciated. The sunny disposition, the easy-going personality and social intuition common in people with Down Syndrome were seen as popular attributes.
So, how is it that this turn in the acceptance of people with Down Syndrome has resulted in an abortion rate of 90%?
Parent advocate groups are concerned about the new, low rate of Down Syndrome births. Suddenly, their children with Down Syndrome face a lonely existence in a significantly diminished population of peers. Funds for research and support would dwindle due to lower incidence of down syndrome births.
In some areas, parent advocates have approached doctors to address the attitude of the medical establishment. Parent advocates suggest the doctors refrain from coloring the diagnosis in a highly negative, anxiety producing manner. They chided doctors for introducing the diagnosis with negative phrases like:
"I have bad news for you , Mrs. Jones." Or, "I'm sorry, Mrs. Jones."
Parent advocates suggest that doctors present parents with informative literature as well as contact information with families with Down Syndrome members. But much of their efforts fall on dead ears. Doctors claim that the information would complicate the decision.
The 90% abortion rate of a particular group of human beings, judged as substandard is eugenics. Eugenics, so popular in Nazi Germany, purported to build a master race. Substandard human beings did not qualify for existence. America responded to this brutal philosophy with horror.
Today, we like to believe we are a tolerant people, accepting diversity and standing on a high moral plain. We obsess with values and hold ourselves in high regard, somehow better than other people, blown up with national provide over our moral superiority.
Yet, 90% of babies with Down Syndrome are aborted. We are, with the encouragement of the medical establishment, denying life to a segment of humanity suddenly deemed as substandard.
Down Syndrome - 'I Love New York'
Down Syndrome. "I love New York."
Is this irony or what
Recent scientific studies show that the over-expression of a particular protein in individuals with Down Syndrome blocks the formation for new blood vessels that encourage tumor growth. Thus, people with Down Syndrome have a much lower incidence of solid tumor growth cancers than the population as a whole.
Scientists speculate that therapies based on this study could lead to promising developments in the fight against cancer. In other words, people with Down Syndrome may offer humanity a significant opportunity to address one of our most dreaded diseases. but a dwindling population of people with Down Syndrome could thwart that research.
Investigations that could lead to a cure for cancer will be terminated. We will have eliminated people with Down Syndrome.
Recent Studies
A recent study announced by the medical journal Pediatrics contends that the incidence of Down Syndrome is slightly higher now than it was 30 years ago. Women are waiting longer to have babies, increasing the chance of a Down syndrome birth. While the risk is 1 in 1,000 for women under 30 years of age, the risk increases with maternal age.
Down syndrome occurred in 9 per 10,000 births in 1979 but is now 12 in 10,000 births. Dr. James Egan, a Maternal Fetal Medicine Specialist claims that the rise is slight. "Because maternal population is aging, we would have expected more than twice as many Down syndrome babies in 2006 as in 1974, but there has been only a slight increase," he said in a recent interview on NPR.
The Homecoming Queen
- Down Syndrome - Strategies for Raising a Child With Down Syndrome
Children with Down Syndrome may need adaptive services and educational opportunities. But raising a child with Down Syndrome is like raising any other child, except that children with Down Syndrome grow at a slower pace and need directed and adapted
- 10 Ways A Baby With Down Syndrome Will Improve Your Life
Down Syndrome, what they used to call Down's Syndrome is a frightening diagnosis, but a child with Down Syndrome may be a blessing in disguise.
- National Down Syndrome Society - Welcome to NDSS
National Down Syndrome Society is the main source of information
New Data Shows Slight Increase in DS Occurance
Comments
Jyoti Kothari from Jaipur on July 24, 2014:
Hi, great hub with noble cause. Thanks. Rated up and useful.
Dolores Monet (author) from East Coast, United States on March 05, 2011:
6hotfingers - even today, some people are seen as more equal than others. I am afraid that government budget cuts will negatively impact people who are disabled or poor. The current thinking that the only people who count are people with money may set us back into the dark ages, humanity-wise. Thank you.
6hotfingers3 on March 05, 2011:
Thank you for this Hub. It reminded us that people born with Down Syndrome are people. They must be seen no other way. Your thorough Hub enlightened people and helped remind them we all come together to make the human race
Dolores Monet (author) from East Coast, United States on January 12, 2011:
Hs - early intervention is so important! My daughter went to a specialized preschool when she was one year old. And this was way back in the day! The mothers stayed with the kids, worked with the kids, and had a group meeting as well. It was a wonderful program and I am close to the teacher 37 years later. Thanks!
HS Matlock on January 11, 2011:
What a wonderful source of information! I have a four year old with Down Syndrome and I work with my state's early intervention program. Thank you so much!!!
Dolores Monet (author) from East Coast, United States on June 20, 2010:
Thank you, oceansunsets, glad that you enjoyed the hub!
Paula from The Midwest, USA on June 19, 2010:
Hi Dolores, This is a great hub, very interesting and informative. It touches the heart, and makes me think. Thank you for encouraging others to think about Down Syndrome and many aspects they may have never considered before.
Dolores Monet (author) from East Coast, United States on April 30, 2010:
katie, thank you. Glad that you enjoyed the hub. PEACE!
Katie McMurray from Ohio on April 29, 2010:
What a great HUB! There is much to be learned from protein studies. I appreciate all the research you put into this a labor of love no doubt! Gifts each and everyone of us have them! Touching Thanks and Peace :)
