A new study published online today in the journal Pediatrics has tracked the prevalence of Down syndrome from 1979 to 2003. Their findings show that cases of Down syndrome present at birth have risen from 9.0 per 10,000 live births in 1979 to 11.8 per 10,000 live births in 2003 -- a jump of 31.1 percent.

The study also determined that in 2002, there were approximately 83,400 children and adolescents in the U.S. who were living with Down syndrome (a rate of 1 in 971).

For more information, you can read the abstract here.

Dr. Brian Skotko, a geneticist at Children's Hospital Boston, has published research showing a decrease in the number of babies being born with Down syndrome since the introduction of prenatal testing. With new prenatal testing options on the horizon, his research highlights the problem between getting test results, and getting accurate information. The test results - either from amniocentesis or CVS - are fairly straightforward. Getting accurate information about the diagnosis of Down syndrome, on the other hand, is far from straightforward.

Dr. Skotko's research found that expectant parents who received a prenatal diagnosis felt that their doctors gave them inaccurate and incomplete information about Down syndrome, and other research has shown that many physicians are uncomfortable and unprepared providing this information.

Dr. Skotko believes:

"Unless improvements are made prior to the arrival of new prenatal tests, a true collision is on its way. More women will be going through the testing process, which could lead to a lot of difficult, uncomfortable conversations between physicians and expectant parents."

Did you receive a prenatal diagnosis of Down syndrome? Do you believe that you received accurate information?

Tell Your Prenatal Diagnosis Story

There are a multitiude of reasons why breastmilk is better for a baby, and while a mother may have the best of intentions, babies don't always cooperate. Some infants learn to latch on easily, and others have a much more difficult time.

In particular, babies with Down syndrome often have a difficult time breastfeeding due to hypotonia or low muscle tone, a poor suckling reflex, and more placid and sleepy nature. If you intend to breastfeed your baby with Down syndrome, you may want to checkout the websites below and consider a consultation with a lactation specialist.

About.com's Breastfeeding Guide Site

La Leche League Factsheet

Hypothyroidism - or an underactive thyroid gland - occurs quite frequently in people with Down syndrome. While some infants are born with hypothyroidism, called congenital hypothyroidism, others develop this disorder later in life.

The symptoms of hypothyroidism - decreased growth rate, constipation, lethargy or tiredness, decreased muscle tone and dry skin and hair - can overlap with the symptoms of Down syndrome, making it more difficult to diagnose in this group. Because of this overlap, it is recommended that all people with Down syndrome have regular screening tests to detect this disorder.

More on hypothyroidism and Down syndrome

Does your loved one have a sluggish thyroid? What were their symptoms?

Recently the CDC published their recommendations that all people with neurodevelopmental disorders, such as Down syndrome, receive the vaccine for the 2009 pandemic influenza A (H1N1) virus which causes swine flu. This recommendation is based on the increased risk for illness and complications among people with neurodevelopmental disorders. There are many reasons that people with neurodevelopmental disorders have an increased risk to get ill but there are steps that you can take to limit their risk.

While it has been recommended that all people with Down syndrome, and other high risk groups, receive the H1N1 vaccine, this vaccine has not been without controversy. Do you plan to have your loved one receive the vaccine? Why or why not?

Poll

Just the Facts about Swine Flu

While I am frequently amazed at the inventive ways that parents raise awareness about Down syndrome, this story in the Boston Globe caught my eye for a different reason.

Karen Gaffney, a 31 year old woman with Down syndrome, swam 5 miles in the Boston Harbor, to raise awareness about the abilities of people with Down syndrome. When asked why she did the swim, she said:

"I did this swim to show people what people like me can do."

Given the fact that she swam in October, and only has the use of one leg due to a hip problem, I think it is definitely fair to say that Ms. Gaffney has a "can do" attitude and a healthy dose of determination!

Congratulations to Ms. Gaffney!

Kelly Fitzgerald, a young woman living in New Zealand, is an inspiration and a testament to the power of determination. Born 31 years ago with Down syndrome, her pediatrician advised her parents to challenge her and not to make exceptions for her disabilities. This approach obviously worked well. Kelly lives independently, has her drivers license, and is looking for a job.

This video from Youtube shows Kelly going through her day and highlights her attitude toward her diagnosis and what can be achieved through determination and support.

Although the video is about Kelly, I particularly enjoyed her mother's comments and would love to read the book that she has written about raising Kelly.

Do you find Kelly's story inspirational?

Since 1981, October has been National Down Syndrome Awareness month and is part of a larger ongoing national effort to raise awareness about the abilities of people with Down syndrome.

While the over arching theme of National Down Syndrome Month is to raise awareness, I have been surprised by the myriad of ways that people choose to do this. Many communities celebrate National Down Syndrome Awareness Month by hosting Buddy Walks. Buddy Walks are community events designed to raise awareness, show support and raise funds for the the National Down Syndrome Society. While Buddy Walks are great - I have also seen lots of other fun events including surfing, golfing and even bocce ball events used to raise awareness and have fun!

What events do you plan to participate in this month? Have you organized something unique - if so, let us know!

These two stories - one from the Chattanooga Press Free Times and the other from MSNBC Sports - speak to the power of inclusion.

Anna Frierson, a 12 year old attending Red Bank Middle School in Lookout Mountain, Tennessee is the school's newest cheerleader. Anna also happens to have Down syndrome. According to the article:

"When we first heard that she wanted to be a cheerleader, we were so excited," said head team captain Hanna Holmes, 13. "She came to our first practice, and she was so sweet. We loved her. She was doing all the cheers, and then she said 'I'm a cheerleader!'"

Later, the girls voted unanimously to have Anna as a permanent part of the team.

Anna's parents, Jim and Patti Frierson, say the acceptance shown by the cheerleaders was more than they expected.

"She doesn't know all the cheers, she's definitely not perfect, but I think the fact that they have included her and accept her for the abilities that she does have is really what learning with special-needs kid is all about," Mrs. Frierson said.

Matt Zeisel, a 15 year old attending Benton High School in St. Joseph, Mo., is the newest team star after scoring a touchdown at the end of the team's last game. Matt also happens to have Down syndrome. Although his team didn't win the game, I think that you can safely say that everyone that was on the field that day was a winner.

Be sure and check out the video of his touchdown at NBC Sports.

The news that actress Katherine Heigl and her husband Josh Kelley, have adopted a child with special needs from Korea, has started a discussion about special needs adoptions. While little Naleigh, as the child is called, is now at home with her new parents in Los Angeles and doing fine, the growing trend of speedy special needs adoptions is raising some concerns.

Ms. Heigl explained on the Ellen Degeneres Show that she and her husband decided to adopt a child with special needs, in part, because of the shortened adoption process. Typically, international adoption of a child without special needs can take up to four years. Adoption of a child with special needs, on the other hand, only takes six months.

I understand the desire for a speedier adoption process, and I do believe that special needs children will always do better in a loving family. But I am concerned that people looking for a "speedy" adoption process could get in over their heads with a child with special needs. In their haste to adopt, new parents may underestimate the commitments and demands of raising a child with special needs.

Do you have concerns about adoptions of special needs children, or do you just think that it is great that they have found a family and home? Which is more important?