Tuesday, October 6, 2009

31 for 21: Day Six

When I received the diagnosis of BOTH boys have Down Syndrome I was doubly concerned that I wouldn't know what to do with them. How they would turn out. How I would need to care for them differently. How different life would be with them.

I am so happy that nothing is different. We have bouts of sickness that lasts a little longer than most children, we've had some medical ups and downs, we've thrown the words therapy, transition, sign language, and non-verbal into our vocabulary. But to us, this just feels normal. Any other baby you have, there's adjustments period. As the mama you just adjust your daily life around the needs of your child, and that is true with the boys as well. This all feels VERY NORMAL to us.

I realize that some reading this may still not know exactly what Down Syndrome is, they just know that my boys are so darned cute they want to learn more about them...and thats ok :) I found this online and think it explains things very well.

Down syndrome

Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from each parent. In most cases of Down syndrome, however, a child gets an extra chromosome for a total of 47 chromosomes. It’s this extra genetic material that causes the physical and cognitive delays associated with Down syndrome.

The cause is unknown, although it isn’t caused by environmental factors or anything the mother does before or during her pregnancy.

It occurs in one of every 800 births. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome. A 35-year-old woman has a one in 350 chance of conceiving a child with Down syndrome. By age 45, the incidence has increased to one in 30. However, because younger women have higher fertility rates, 80 percent of babies with Down syndrome are born to women under the age of 35.

Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, a single crease across the center of the palms, and an enlarged tongue.

Low muscle tone and loose joints are also characteristic of children with Down syndrome.

Half of all children born with Down syndrome also have congenital heart defects and are prone to developing pulmonary hypertension (high blood pressure in the lungs). Approximately half of all kids with Down syndrome also have problems with hearing and vision. Other medical conditions that may occur more frequently in children with Down syndrome include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection and a higher risk of childhood leukemia. Diagnostic tests for pregnant women are about 99 percent accurate in detecting Down syndrome and other chromosomal abnormalities.

Source: Kidshealth


The MAJOR thing I disagree with in this article is the statement at the end that says Diagnostic testing is 99% accurate. FALSE!! FALSE!! FALSE!! I was carrying two children with Down Syndrome, I had the testing just to be prepared, bloodwork, Level II sonograms (3 of them) and nothing came back out of the ordinary. As a matter of fact, it was said aloud more than once, that there was NO signs of Down Syndrome in my children. So its a very bitter fact for me to read that so many women are getting abortions these days on just a TEST. The only accurate way to tell during pregnancy is an amnio and even so, these children are true blessings from God and I hope that I would be able to touch one person's heart who may think otherwise.

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