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Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts

Diagnosis Down Syndrome - How to Handle the News That Your Baby Has DS

If you are interested in reading about the condition known as Down syndrome, by now, you have probably read the definitions and history of Langdon Down's identification of the syndrome. You have probably read medial articles that explain the symptoms of Down syndrome, both physical and mental. You understand that the genetic condition causes significant developmental delays. You have probably seen pictures of both adults and children with DS.

But no investigation into the topic of Down syndrome is complete without delving into the actual lives of people and families who have been involved with a person who has Down syndrome, or meeting a few people who have the condition themselves. Viewing such folks on television does not count.

If you have a new baby who has been diagnosed with Downs, or have had prenatal testing that indicates that your child has Downs syndrome, do yourself a favor and find out what the condition means in the real world. When you find out what it is really like to live with a child or an adult who has Down syndrome, you will be better able to cope with the reality of the situation.

Clinical and educational information is all well and good, but does not thoroughly inform you.

First, read up on the subject. Read articles written by the parents of children with Down syndrome. Then, contact local organizations that can put you in touch with families affected by Down syndrome. Talk to the parents of children with this developmental disability. It may be very helpful to you to meet a person who actually has Downs syndrome.

Forty years ago, a family who had a new baby or young child with Downs was routinely encouraged to place the child in an institution. Today, prospective parents who receive the diagnosis through prenatal tests are often encouraged to abort the child. Both instances can be viewed as equally inhumane, in that the personhood of the child is not considered.

As medical technology has advanced, and society has advanced toward a more considerate appreciate and acceptance of differences and disabilities, the prospect of aborting a child with Down syndrome seems backward thinking and inhumane.

If you are pregnant and your doctor has suggested prenatal testing, go for it. Even if you are staunchly pro-life, the knowledge that you gain is valuable. Imagine, not having the tests, and suddenly being confronted with such a frightening diagnosis for you new baby. Chances are you would be shocked and confused.

But, if you are prepared ahead of time, you can research al the aspects of Downs syndrome so that you can greet your new baby without prejudice, without worry, or the feat that can be devastating without preparation.
Any child should be welcomed into the world with acceptance and joy. A new baby deserves unconditional love and should not be introduced to the world by anxious, fearful parents.

In this life, we are all flawed. A child with Down syndrome is first a child, everything else is secondary.

In any event, information will make life easier for you and your child.

http://hubpages.com/hub/10-Ways-A-Baby-With-Down-Syndrome-Will-Improve-Your-Life is an article by a mother who had a child with Down syndrome 37 years ago. She tells how her life has benefited from living with her daughter and relates the positive aspects of dealing with a child with a developmental disability.

http://hubpages.com/hub/Down-Syndrome---Strategies-for-Raising-a-Child-With-Down-Syndrome is an article that suggests ways to help your child with Downs syndrome lead a healthy and fulfilling life.

Who Has Down Syndrome Babies?

Most people associate having a child with Down syndrome with older women. While it is true that women over 35 do have an increased risk of having a child with Down syndrome, 80% of these children are born to those women under age thirty-five.

In the United States, approximately 5,000 babies with Down syndrome are born every year. A woman’s chance of having another baby with Down syndrome is approximately 1 in 100.

Prenatal Screening for Down Syndrome

Over the last 10 years, new technology has improved the methods of detection of Down syndrome. While there are ways to diagnose Down syndrome by obtaining fetal tissue samples by amniocentesis or chorionic villus sampling, it would not be appropriate to examine every pregnancy this way. Besides greatly increasing the cost of medical care, these methods do carry a slight amount of risk to the fetus.

So screening tests have been developed to try to identify those pregnancies at "high risk." These pregnancies are then candidates for further diagnostic testing.

Screening Vs Diagnostic Test

What is the difference between a screening test and a diagnostic test? In diagnostic tests, a positive result very likely means the patient has the disease or condition of concern. In screening tests, the goal is to estimate the risk of the patient having the disease or condition.

Diagnostic tests tend to be more expensive and require an elaborate procedure; screening tests are quick and easy to do. However, screening tests have more chances of being wrong: there are "false-positives" (test states the patient has the condition when the patient really doesn't) and "false-negatives" (patient has the condition but the test states he/she doesn't).
Maternal Serum Screening

The mother's blood is checked for three items: alpha-fetoprotein (AFP), unconjugated estriol (uE3) and human chorionic gonadotropin (hCG). These three are independent measurements, and when taken along with the maternal age (discussed below), can calculate the risk of having a baby with Down syndrome.

A very important consideration in the screening test is the age of the fetus (gestational age). The correct analysis of the different components depends on knowing the gestational age precisely. The best way to determine that is by ultrasound.

Test results are sometimes reported to doctors as "Multiples of the Median (MoM)." The "average" value is therefore called 1.0 MoM. Down syndrome pregnancies have lower levels of AFP and estriol, so their levels would be less than 1.0 MOM.

hCG in a Down syndrome pregnancy would be greater than 1.0 MoM.

Finally, the calculated risk is used to modify the risk already statistically calculated based on the mother's age. We already know that as the mother's age advances, the risk of having a baby with Down syndrome increases.

For example: Let's say the test results come back in the typical range for a pregnancy not associated with Down syndrome (that would be 1.0 MoM for all components). This result reduces the woman's risk of having a child with Down syndrome four-fold.

Jane Orville is the mother of a 17 year old daughter with Down Syndrome and has spent years researching and compiling a simple guide to assist parents deal with the concerns of raising a child with Down Syndrome.http://www.down-syndrome-help.com

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