31 for 21: Day 6 {Let's Educate}

On October 8, 2008, President Bush signed the Kennedy-Brownback bill ... otherwise known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Essentially, the act provides that families receiving a prenatal or postnatal diagnosis of Down syndrome or other conditions will be offered accurate and up-to-date information about the nature of the condition and also connected with support services.

This is something that is now imperative, since there has been a recent push for all pregnant women (versus just older women) to do early screening for Down syndrome ... typically around 12 weeks of pregnancy. Blood work and an ultrasound are involved in telling them whether or not their baby may have Down syndrome.

This is all fine and dandy ... however, women who learn that they are at high risk are often not given accurate and up-to-date information about Down syndrome. Thus causing them to terminate their pregnancy, sometimes after being pushed to do so by their OBGYN.

And that makes me want to throw up.

Because at the end of the day, these women are terminating their pregnancies without being properly educated. And in the end, that means that the Down syndrome population is slowly dwindling.

So what does that mean for my girls? Again, it makes me want to throw up.

Many people may not understand my stance on this, but really ... does it really look like my girls have such a horrible life, that they deserve to not be here?

I'm done. I don't even want to talk about it anymore.

Although, I will soon be talking about it a lot since my friend, Linda, and I are spearheading the Changing Lives Program here in Northern Virginia since it has yet to really been taken off the ground. I honestly cannot wait to get out there and talk with OBGYNs, give them accurate info and maybe even bring along my daughters so the doctors can have them permanently etched in their mind.

Things are so different today for people with Down syndrome, so different than even 10 years ago, let alone 30 years ago. Most people have such a negative connotation of what people with Down syndrome are like, what they will be like. Times are changing folks and I will admit that I am not someone who is cheering for the Down syndrome population to be eliminated on earth.

Wouldn't you feel that way if you were in my shoes?

She's Famous ... and Changing Lives

My baby girl {Payton} ... she made the cover!

Our local Down syndrome group put together this brochure for new parents. I was contacted and asked if Payton's picture could be used on the cover ... how sweet is that?! It makes me so happy that her little face is among the first that will be seen by new parents.

I may be biased ... in fact, I know I'm biased ... but how could you see her little smiling face on the cover of this brochure and not have a teeny tiny sense of relief that maybe, just maybe ... your baby will be okay.

As you open the brochure, it has a special message for new parents. The message essentially lets them know that although their baby has an extra chromosome, that their baby is still just a baby ... he/she sleeps, poops, cries and eats just like any other baby. The message lets them know that individuals with Down syndrome share more characteristics with their families than they do with each other. The message lets them know that individuals with Down syndrome can lead very normal lives.

On the back side of the brochure, there is a listing of contacts for our local Down syndrome group, as well as contacts for local resources ... such as Early Intervention services by county ... and national resources ... such as the National Down Syndrome Society.

So what does any of this really have to do with anything?

Well, I'm glad you asked!

I have been following the blog of a family that recently received news that their unborn baby boy has Down syndrome. Today, Adrienne {the mother} was talking about the lack of information that she received after suspicions arose that her son may have Down syndrome.

This is very common and it needs to stop.

It is called Changing Lives ... a program designed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome. The Changing Lives Program was developed by the National Down Syndrome Society for local groups to present to the professionals in their area.

Ideally, a Changing Lives Program will …

• Educate professionals on the medical and developmental needs of people with Down syndrome and the best-care practices to address them.
• Prepare professionals to deliver diagnoses and other sensitive information.
• Provide information on local and national resources.
• Supply materials and information for new and expectant parents.
• Foster on-going relationships between professionals and parents.

But the problem is not enough local groups are embracing Changing Lives and running with it. My local group has this program, but I'm not sure how much has been done yet. {Note to self: email the person that is heading it up and get involved.} This program means so much to me because of exactly what Adrienne ... and the rest of us ... experienced.

After Payton was born, I was handed a brochure that was titled ... "Breastfeeding the Down syndrome child." Hello ... I think it was published in 1942! Not to mention the fact that reading this title seems to infer that THE Down syndrome child is not even a child at all and that his/her life has no value. How about A child with Down syndrome? The information was outdated and that is the purpose of Changing Lives.

So what are you doing to support Changing Lives? If you work in the health care field, have you heard of such a program? What can you do to help?

Let's brainstorm people. We can do this. We can help parents who receive a new diagnosis ... be it prenatally or after birth ... to have the information that they need.