Tuesday, October 12, 2010

Prenatal Testing & Research Funding for Down Syndrome

Warning! Stepping on my soapbox...

I've touched on both of these subjects in the past, here is what I said when we were asked about prenatal testing during my pregnancy with Eleanor and here is where I talked about how I felt about the March of Dimes' funding research. Of course, those subjects come up again and again.

This week, I read an article posted on my favorite mothering website/magazine about new prenatal testing soon to be available that is supposed to be definitive testing via blood sample, as opposed to the current blood screenings. Whenever I read of these advancements in early prenatal detection, the underlying purpose always seems to scream out at me: FIND OUT IF YOUR BABY IS DEFECTIVE EARLY ENOUGH TO GET RID OF IT BEFORE YOU GET TOO ATTACHED! They like to sugar-coat it and say, "we want mothers to have time to "prepare" for the birth of their special needs child." B period S period

If they want mothers to prepare, than they should give them immediate resources that are balanced, up-to-date and accurate. You know, like the information required thanks to the Kennedy-Brownback law. Sadly, the medical field just absolutely does not do this. They immediately ASSume that prenatal testing= terminate if there are problems and then try again. So they offer up the termination choice first and if asked to offer other options, most just fumble around and claim not to know how to provide resources. It's not that hard! Google: down syndrome support and they can print off a dozen reliable sources immediately to take to the appointment when they deliver the news to expecting parents. Time and time again, support groups have contacted medical care providers and offered them brochures, books, phone numbers, etc for free to pass on to new parents. Yet time and time again, parents that eventually find the support say, "My doctor didn't tell me there were support groups. My doctor didn't tell me anything about life with Down syndrome. My doctor recommended termination. My doctor scheduled the abortion for me before he delivered the news."

And, thus, roughly 90% of prenatally diagnosed pregnancies with Down syndrome in in termination.

The majority of current research marked "for Down syndrome" is directed at early detection. Ways to "catch it" as soon as possible so the parents can end the pregnancy. See, if that termination rate gets high enough, then Down syndrome will be "cured". The reality is, there is not and never will be a cure for Down syndrome. Science can't genetically alter fetuses after conception.

Instead, we need to make sure that the research money raised or nationally budgeted by the government for Down syndrome is instead used to focus on improving the well-being of life WITH Down syndrome. Look at ways to improve heart defects, Alzheimer's, pulmonary disease, cancers. These are all condition that affect the life of people with Down syndrome as well as others. Put the money into early education, provide therapy for more instead of trimming the budgets to once a month. Send teachers to inclusion seminars. Help parents find and fund the resources they need to adapt their homes for their children.

Stop focusing on erasing Down syndrome from society. As I read on Facebook several times this week:
Oh my gosh... There is a cure for Down syndrome, its called ACCEPTANCE! Who knew...

6 comments:

Julie Steen said...

I agree with you Deborah. As I have told you before, I did do the prenatal testing, and Maddy came up with a high-ish chance of having Downs. We didn't really care. It seems like my doctor told me I had to do the blood test, so I did it. I wonder if the people posting "end DS" realize that they're saying "those babies should never be born"?? Perhaps they think they are rallying for some type of medicine or something?

Deborah (SunflowerStories) said...

Yes, Julie, I think you hit it on the head. Most people don't understand that it is a genetic condition that affects every cell in the body. You can't change cellular structure, you can only kill it, such as what they do when fighting cancer. Since Ds is in skin, bones, hair, muscles, and organs... well, there's just no way to remove that extra chromosome.

Sadly, too many doctors phrase things towards mothers that make it seem testing or policies are not optional, when in fact they are. They don't offer informed choices, but rather push for the choices they want made. They'd rather have a prenatal dx to prevent any backlash at birth.

kim said...

love you stepping on the soapbox, great post, left a message at fb!

Brandie said...

Great post! I was so naive when it came to prenatal testing before I had Goldie. We declined when I was pg with Hank. Then, at my 18 wk u/s the dr refused to go over the results unless we saw a genetic counselor first because we had a child with DS. I never did meet that dr. It just reaffirmed my choice to deliver with a midwife. (who does not use that hospital anymore)

Cindy said...

Thanks for this post!

Tiffany said...

Fantastic post! One of my favorite soapboxes, too!