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...