As a parent with a child with Down Syndrome, I am really excited about the opportunity being presented by the Global Down Syndrome Foundation. The foundation is dedicated to research, medical care, education and advocacy. The foundation is putting together a pamphlet for expectant parents. AND they are giving time for you to give input on this brochure. Do you want to make sure that the information given to potential parents is true and realistic? Do you want to be an advocate? With all the new technologies and commercial tests for Down Syndrome on the market, I think more information needs to be available to potential parents. And it needs to be accurate information, not fairy tales, myths, mis-truths or unrealistic expectations. (I am not associated with the Global Down Syndrome foundation, just a parent who wants the correct information out there.) Can you participate and give your input?

Pregnancy blood test can identify Down's syndrome

Updated 10:10 08 June 2012 by Sara Reardon

TESTING whether a fetus has Down's syndrome is getting easier - and less risky. Several companies, all based in California, are launching tests that work on a pregnant woman's blood, rather than requiring an invasive procedure.

The tests are already proving controversial, with opponents of abortion concerned that more women will decide to terminate their pregnancy. "We oppose testing for the purpose of killing unborn children who are found to have disabilities," says Jessica Rodgers, spokeswoman for the National Right to Life Committee.

Brian Skotko, a Down's syndrome researcher at Boston Children's Hospital, says this isn't an unreasonable concern. The new tests will see prenatal diagnoses skyrocket, he says. "Unless the healthcare community ensures that these women receive accurate information about Down's syndrome, I think that a reasonable prediction is that fewer babies with the syndrome will be born."

Down's syndrome, caused by an extra copy of chromosome 21, is generally detected by amniocentesis, which involves inserting a needle into a pregnant woman's belly to sample cells from the fluid bathing her fetus. It carries a 1 per cent risk of miscarriage and is usually performed between 15 and 20 weeks into pregnancy - which in some US states is right up against the legal time limit for abortion. Chorionic villus sampling, which samples tissue from the placenta, can be performed earlier, but has an even higher risk.

The new tests instead detect DNA from fetal cells that have broken down. Some of this DNA crosses the placenta and gets into the mother's bloodstream, and the tests look for an excess of material from fetal chromosome 21.

First out of the gate was Sequenom of San Diego, which launched its long-awaited test for Down's last October. Verinata of Redwood City released its test in March, while Ariosa Diagnostics of San Jose will launch a test this week; both of these can detect extra copies of chromosomes 13 and 18 too, each associated with distinct chromosomal conditions. Later this year, Nateraof San Carlos will market a test that can also detect additional copies of the X and Y sex chromosomes.

Not only do the blood tests eliminate the risk of miscarriage, they are also claimed to have lower error rates than conventional tests. At a conference on prenatal genetic testing at Stanford University in California last week, Kenneth Song of Ariosa said that its test turns up false positives in less than 0.1 per cent of cases - compared with 5 per cent from invasive tests. The other companies report similar results.

The new tests can be run from about 10 weeks into pregnancy. In some US states, the extra time this will allow may be crucial as women decide whether to carry a fetus to term. Nine states currently ban abortions after 20 weeks on the grounds that a fetus can feel pain at this age; 11 others are considering such legislation.

Will the extra time lead to a surge in abortions? That fear "gives women too little credit", argues Jaime King of the University of California Hastings College of the Law in San Francisco. She suggests that if women have more time to gather information on raising disabled children they might be more likely to keep the pregnancy.

Here is the survey.

After you read through the pamphlet draft, please take a moment and answer the survey? This is our opportunity to make a difference.

The survey can be found HERE.

Prenatal Test Pamphlet Review

Required Question(s)

	Thank you for your interest in reviewing this draft of our prenatal test pamphlet. Please note that this draft contains only the content of the pamphlet, and does not reflect visual or graphic formatting as it will appear in the final version. In each section below, you'll have 1000 characters to provide your input. Global Down Syndrome Foundation National Down Syndrome Congress

Please enter your contact information below.

First Name:
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Section 1 of the Pamphlet

You are pregnant

What if your doctor recommends a test to see if your baby has Down syndrome?
The information below may be helpful to you and your family if:

You are considering getting tested to see if your baby has Down syndrome
You had a test and the results show your baby might have Down syndrome
You had a test and the results show your baby does have Down syndrome

Informed Consent
By law, women should not be tested unless they give their doctor permission. Women should only give such permission when they understand what the tests measure and any associated risks. A genetic counselor can help you understand the pros and cons of testing and results of your test.

For more information about prenatal testing, please refer to the Resources section.

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Section 2 of the Pamphlet

What is a "prenatal test" for Down syndrome?

Generally there are two types of tests a woman can have while she is pregnant to help determine if her baby has Down syndrome - these are called "prenatal tests":

(1) Screening tests - There are few or no risks associated with screening tests. Screening tests such as blood tests and ultrasounds tell us what the chances are that a baby will have Down syndrome. These tests cannot tell us for sure if a baby has Down syndrome, but if the test shows that the chances are high, doctors may recommend a "Diagnostic" test.

(2) Diagnostic tests - there are two diagnostic tests that can tell us with almost 100% accuracy if a baby will have Down syndrome. The amniocentesis test (amnio for short) is usually performed after the 15th week of pregnancy. The Chorionic Villus Sampling (CVS for short) is usually performed between the 10th and 12th week of pregnancy. Both tests have a small but real risk of causing miscarriage.

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Section 3 of the Pamphlet

What is Down syndrome?
Down syndrome, also known as trisomy 21, is a condition where a person is born with three copies of chromosome 21 instead of two. In the United States, 1 in 691 babies is born with the condition. There are hundreds of thousands of people with Down syndrome in the United States, and an estimated six million people with Down syndrome worldwide.

The cause of Down syndrome is unknown. We do know 98% of the time, Down syndrome is not hereditary and 2% of the time the condition is inherited from a parent who is a "carrier" of an extra chromosome 21. The chances of having a baby with Down syndrome increase with the mother's age, although 80% of babies born with Down syndrome are born to mothers under 35 years old.

It is important to note that Down syndrome has nothing to do with race, nationality, socioeconomic status, religion, or anything the mother or father did during pregnancy.

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Section 4 of the Pamphlet

How will Down syndrome affect my baby?

There is no way to know what the future holds for any baby. In most ways, babies with Down syndrome are like other babies. They need all the same love and care. However, the healthcare and education needs of a person with Down syndrome can be different or more demanding than for a typical person. Below are some facts about people with Down syndrome that may be useful to know.

General facts about people with Down syndrome in the United States

The average lifespan of a person with Down syndrome is 60 years old.
There are physical and intellectual delays from birth but there is a very wide variety of abilities in people with Down syndrome that are impossible to predict ahead of time.
By law, people with Down syndrome must be provided an appropriate and free public education.
In the last several years, the average IQ of a person with Down syndrome has increased approximately 20 points and most people with Down syndrome have IQs in the mild to moderate range of intellectual delay.
Since the human and civil rights movements that began in the 1960s, people with Down syndrome are increasingly an important part of society.
People with Down syndrome participate in school, religious groups, sports teams, performing and visual arts programs, volunteer organizations and in the workplace.
A growing number of people with Down syndrome live independently.
A small but growing number of people with Down syndrome are choosing to get married and live together.

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Section 5 of the Pamphlet
MEDICAL facts about people with Down syndrome in the United States

Up to 50% of babies with Down syndrome are born with a congenital heart defect and some will require surgery. Almost 100% of these heart defects are correctable.
"Early intervention" for babies with Down syndrome is very important. The appropriate physical and speech therapies in the first five years can make a huge difference for a child's physical and intellectual development.
People with Down syndrome have an increased risk for other medical conditions such asrespiratory issues, hearing problems, childhood leukemia, thyroid conditions, and Alzheimer's disease. However, many people with Down syndrome do not have these conditions, and since most of these are now treatable, the majority are able to lead healthy lives.
People with Down syndrome have significantly decreased risk for solid tumor cancers, heart attack and stroke.
Appropriate medical care for children and adults with Down syndrome is very important and can influence that person's physical and intellectual ability.

For more information about medical care for babies and adults with Down syndrome please refer to the Resources section below.

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Section 6 of the Pamphlet

How will a baby with Down syndrome affect my family?

Many parents are concerned about how a child with Down syndrome will affect their family, including siblings.

If there is a high chance or test results that indicate your baby will have Down syndrome, it is natural to feel sad or worried. A baby with special needs is not something people usually plan for and there could be medical, educational, and/or financial challenges.

Every family is unique and may deal with the idea of, or the birth of, a baby with Down syndrome differently. Despite potential challenges, personal accounts and studies show that many families that have a child with Down syndrome are stable, successful and happy, and that siblings often have increased tolerance, compassion and awareness. One major study on marriages and Down syndrome shows that the divorce rate among parents of children with Down syndrome is lower than the national average.

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Section 7 of the Pamphlet

What resources are there for people with Down syndrome and their families?

There are many organizations working hard to ensure good and reliable resources for people with Down syndrome and their families. In addition to the national and global support organizations listed below, there are an estimated 300 local Down syndrome organizations in the United States so chances are there is one in your area.

Below are just some of the organizations you may want to consider contacting or visiting:

Global and National Support Organizations
National Down Syndrome Congress, www.ndsccenter.org
National Down Syndrome Society, www.ndss.org
Global Down Syndrome Foundation, www.globaldownsyndrome.org
International Mosaic Down Syndrome Association, www.imdsa.org
Down Syndrome Affiliates in Action, www.dsaia.org

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Section 8-a
Medical Care and Research
Pediatric Guidelines for Children with Down Syndrome,
http://pediatrics.aappublications.org/content/early/2011/07/21/peds.2011_1605.full.pdf
Down Syndrome Pregnancy, www.downsyndromepregnancy.org
Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News,http://www.brianskotko.com/images/stories/Files/ajmgprenatalguidelinesfinal.pdf
Down Syndrome: Health Issues - News and Information for Parents and Professionals,www.ds-health.com
Adult Guidelines for Individuals with Down Syndrome,http://www.aafp.org/afp/2001/0915/p1031.html
Anna and John J. Sie Center for Down Syndrome, Children's Hospital Colorado,www.childrenscolorado.org/conditions/behavior/sie-center-for-down-syndrome/about.aspx
The Jane and Richard Thomas Center for Down Syndrome, Cincinnati Children's Hospital,www.cincinnatichildrens.org/service/t/down-syndrome/default/

	Section 8-a: Comments and Suggestions
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Section 8-b:
Down Syndrome Center of Advocate Lutheran General Hospital, ILhttp://www.advocatehealth.com/luth/downsyndromecenteradultsandteens
Down Syndrome Clinic, Nemours/Alfred DuPont Hospital for Children, DEhttp://www.nemours.org/service/medical/genetic/downsyndrome.html
Down Syndrome Clinic, Kennedy Krieger Institute, MD,http://www.kennedykrieger.org/patient-care/patient-care-centers/down-syndrome-clinic-research-center
Down Syndrome Program, Children's Hospital of Boston,http://www.childrenshospital.org/clinicalservices/Site2845/mainpageS2845P0.html
The Judy Center for Down Syndrome, Hackensack University Medical Center, NJ,http://www.thechildrenshospitalhumc.net/index.aspx?lobid=1036
Down Syndrome Center, Children's Hospital of Pittsburgh,http://www.chp.edu/CHP/downsyndrome
Trisomy 21 Program, Children's Hospital of Philadelphia,
http://www.chop.edu/service/trisomy-21/home.html?id=76670

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Section 8-c
Eastern Penn. Down Syndrome Center, http://www.epdsc.net/
Adult Down Syndrome Center, University of Vermont College of Medicine,http://www.riverbendds.org/index.htm?page=vt.html
Adult Down Syndrome Clinic, University of Alabama at Birmingham,http://medicine.uab.edu/genetics/80730/
Down Syndrome Center, Hope Haven Clinic, FL,
http://www.hope-haven.org/down-syndrome-counseling/
Down Syndrome Clinic, Emory University School of Medicine, GA,http://genetics.emory.edu/DSC/
Comprehensive Down Syndrome Program, Duke Children's Hospital and Health Centerhttp://www.dukechildrens.org/services/medical_genetics/down_syndrome_clinic
Down Syndrome Center at Medical University of South Carolina Children's Hospital,http://www.musckids.com/downsyndrome/
Down Syndrome Clinic, Children's Hospital at Vanderbilt,http://www.childrenshospital.vanderbilt.org/interior.php?mid=254

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Section 8-d
Ann Whitehill Down Syndrome Program, Riley Hospital for Children, Indiana University Health, http://iuhealth.org/riley/developmental-pediatrics/down-syndrome/
Down Syndrome Clinic, Peyton Manning Children's Hospital at St. Vincent, IN,http://peytonmanning.stvincent.org/content.aspx?p=240
Down Syndrome Clinic, Children's Mercy Hospital, MO,http://www.childrensmercy.org/Content/Pediatrics/Genetics/DownSyndrome/
Down Syndrome Center, St. Louis Children's Hospital, MO,
http://www.stlouischildrens.org/our-services/down-syndrome-center
Down Syndrome Clinic at Nationwide Children's Hospital, OH,http://www.nationwidechildrens.org/down-syndrome
Down Syndrome Clinic of Wisconsin, Children's Hospital of Wisconsin,http://www.chw.org/display/PPF/DocID/33576/router.asp

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Section 8-e
Center for Down Syndrome at the Lucile Packard Children's Hospital at Stanford,http://www.lpch.org/clinicalSpecialtiesServices/ClinicalSpecialties/centerDownSyndrome/index.html
Down Syndrome Center, Rady Children's Hospital San Diego,http://www.rchsd.org/programsservices/a-z/c-d/downsyndromecenter/A002851
Adult Down Syndrome Clinic, UC San Diego School of Medicine,http://neurosciences.ucsd.edu/2page.php?id=DS
Down Syndrome Clinic, University of Arkansas for Medical Science,http://www.uamshealth.com/downsyndrome
Down Syndrome Clinic, Children's Medical Center of Dallas,http://www.childrens.com/specialties/down-syndrome/
Down Syndrome Clinic at Texas Children's Hospital,http://www.texaschildrens.org/Locate/Departments-and-Services/Developmental-Pedatrics/Down-Syndrome/

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Section 8-f
Down Syndrome Program, Doernbecher Children's Hospital, Oregon Health & Science University, http://www.ohsu.edu/xd/health/services/doernbecher/programs-services/down-syndrome.cfm?WT_rank=3
Linda Crnic Institute for Down Syndrome,http://www.MedSchool.UCDenver.edu/LindaCrnic
Research Down Syndrome, www.researchds.org
Down Syndrome Research and Treatment Foundation, www.dsrtf.org
Anna's Angels Foundation, www.annas-angels.org/studies.html
Poll: Americans overwhelmingly support government programs and research for people with Down syndrome, www.globaldownsyndrome.org/press

Early Intervention, Educational and Emotional Supports
Woodbine House Books on Down Syndrome, http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm

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Section 9

Adoption
Families may decide that making an adoption plan is the right choice for their family. The National Down Syndrome Adoption Network can give you more information about that choice. The mission of the network is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family. It is important to note that there are hundreds of families across the country wit hcompleted home studies, hoping to adopt an infant with Down syndrome.

While there is a wait list in the United States for such adoptions, there are many children with Down syndrome from abroad who are waiting for adoptive families. To learn more, you can visit Reece's Rainbow Down Syndrome Adoption Ministry - Adoption Grants & Advocacy for Orphans with Down Syndrome and Other Special Needs,http://reecesrainbow.org/.