Thursday, March 8, 2012

Canary in the Coal Mine

This is the third in a series of posts discussing the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding these tests, as well as bring a call to action. As always, thoughtful and respectful discussion is welcomed in the comment section.


Abby



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Canary in the Coal Mine
by Libby Hodge

Recent advances in prenatal testing allow mothers to learn about the genetic makeup of their unborn baby - specifically if their child has Down syndrome - much earlier in their pregnancy.  Some herald these tests as a “major step forward in prenatal diagnoses.”  However, the introduction of these tests also have many proclaiming that people with Down syndrome could soon be extinct.

Ben


Extinct?!


I hate to be a killjoy {so to speak} but don’t you think it’s strange that as a society we have targeted a specific group of people for extinction and no one is raising a stink?


Perhaps most people think this subject isn’t relevant to their life?


Let me be very clear.  This isn’t just about Down syndrome.  For now, Down syndrome is the canary in a coal mine that is being mined endlessly in our quest for human perfection.

Ella

The ethical dilemmas brewing in the world of prenatal testing will one day impact each and every one of us.  This is just the beginning - there will be other tests - and we need to wake up to the fact that we have already begun walking down a very slippery slope of eugenics.  Yes, eugenics; a revival of a social movement which advocated in the early part of the last century the use of practices aimed at the extermination of undesired groups of the human population.  Some examples of eugenics in our recent history include the Japanese interment camps as well as the horrific holocausts in Germany, both during WWII.


Think I’m taking this a bit too far?  Certainly we’re way more progressive than those before us?  Or perhaps we too, are just as blind to a fast-growing social movement that is quietly unfolding in OB offices all across our nation – the practice of prenatal testing and screening specifically targeting babies with Down syndrome.


Lexi


It would be silly to assume that the growing numbers of prenatal tests are developed in an altruistic fashion or simply in response to consumer demand. While it might seem as though these behemoth companies are actually doing us a public service - ridding our world of imperfection - let it be stated for the record that they are actually in it to improve their profit margins.  There is no doubt about it, these tests are financially appealing to insurance companies and to our government health systems as well.  The facts speak for themselves: it is cheaper in the long run to abort a child with Down syndrome than it is to insure a child with Down syndrome from birth to death.


Still wondering why should you care about the push to make prenatal testing and a diagnosis of Down syndrome easier?  After all, it could relieve our society of a large economic burden…

Broden


Well you can bet your bottom dollar that by the time they get this whole Down syndrome thing taken care of {by *taken care of* I really mean; required prenatal testing and an abortion after each diagnosis} they will set their sights on something else.  Autism?  Alzheimer’s?  Cancer?  Diabetes?  Don’t worry, musculoskeletal issues like club foot and cleft lip/palate are already targeted, despite the current medical advances that allow them to be corrected.


Won’t it be nice to live in such a world rid of such burdens?

Ellie


Yet there is another side of this debate that is rarely discussed.  While all of these prenatal medical “advances” are taking place, little or no discussion is given to greater ethical or moral implications.


Have we even stopped to consider the consequences of our actions?  We claim to be a progressive and inclusive society, yet the number of babies terminated after receiving a diagnosis of Down syndrome only continues to rise.

Harper


So much for diversity and acceptance.


Ask yourself:  Is it even ethical to use the information provided by prenatal test to potentially abort a fetus?  Have we even considered what “syndrome”, medical condition, or physical characteristics will be targeted next?


Where do we stop in our pursuit of the "perfect" human?


What ever happened to our pursuit of the common good?


Benji


Make no mistake about it, as a society our actions reflect our values.  Perhaps it's time we asked ourselves some tough questions.  What makes a life valuable?  Is a person with a disability valuable?  Those who are elderly?  Those who have yet to be born?


We are making a big gamble by sitting back and allowing these life-altering decisions to be made for us.  You might feel safe in your position for now, but be forewarned, this slope is slippery. What happens if your perfectly genetically healthy child has an accident that results in a brain injury?  For the rest of their life, that child is certainly going to be a financial burden for the insurance company or government health care program.  Does this mean their life no longer has value?  Or maybe your child is diagnosed with diabetes.  That’s a lifetime of medical care and expense.  Is this a disability we’re willing to accept?  Or grandma is pushing 90 and her medical costs are starting to add up…


Do you have the courage to choose what is best for the greater good over what is convenient for the here and now?


Today it’s about Down syndrome but tomorrow what’s next?

Norah


I challenge you today to rethink the value of each and every life.


Vera
 Please add your thoughts, concerns, and questions in the comments section. Perhaps our conversation can become action.

35 comments:

Mike Sullivan said...

Fantastic post Libby. This will be the defining issue of our era and eugenics will turn people back towards choosing life.

Deanna said...

thank you! Yet another wonderful post!

Mom24 said...

I understand your points, and I share a lot of your concerns. I think you're target is misplaced however. While I have always chosen in the past not to have prenatal testing were I to get pregnant again I'd like to have the choice and I'd like to have my insurance pay for it. $1200 is very burdensome. I personally know families who have undergone prenatal testing, found out something was wrong, and it enabled them to make better choices about their baby's healthcare--being born in another city where there were doctor's available that had experience with that situation, for example. There's also the issue of surgery to close spines with spinal bifida. I don't think insurance paying or not paying for a test is truly a good pro-life argument.

Angel said...

Beautiful post and pics. I hope people can open their eyes to what the acceptance of this test really means. Our children deserve a chance.

lovemy3 said...

Great post! I hope that your posts open eyes. Let me know if you need more pics.

Lori said...

This is truly a HEART issue...and America as a whole has fallen so far from caring about much beyond "what's in it for me"...you see it everywhere and in everything, and our society has become numb and blind to it...so numb and blind that we are producing a test, and providing the option of murder with no earthly consequences, that will supposedly make people's lives easier and more comfortable physically and financially...(me me me me me - sung musically of cours) so numb that the idea of killing a baby isn't considered murder, it is considered compassion(me me me me me)...sick...I know that there is a small beat in the heart of America...every now and then you see it pop it's selfless head up...if anything is going to change, it will start like this...someone passionate about making a change, stepping out and putting themselves on the line to make a difference...this blog is how it starts!!!

Lexi said...

Simply beautiful (and I'm not just saying that because my daughter's picture is on here).

I always say that I'm glad there's no prenatal test for autism, because we would see the same thing happen to children with autism as we do children with Down syndrome.

It's sad to me that so many people see my children (my son who is 8 has autism, my daughter, the first pictured, has Down syndrome) as a burden and not the true joys that they are. I am the lucky one to have them. I am the one that is learning and growing. I need them. They came to this earth perfect spirit beings. To help US.

Abby is the light of my life. I could not imagine people willingly snuffing out such a light.

Thanks for the post, Patti. I'm sharing it now.

Katy said...

Mom24: I totally get what you are saying. And after my first son was born with Down syndrome, I definately chose to have the test done with my second pregnancy because I knew it would be all I would think about. I knew I would do nothing about it and would never terminate, but I wanted that info. I'm for people getting the test if they choose (though of course it's such a TERRIBLE commentary on our society that most then terminate just for the reason of DS).

But I've discovered my issue with this all of late is the recent GOVERNMENT funding of this. If private individuals or insurance companies want to fund this or part of it, that's their choice. Or at least I'm not yet positive how I feel about it being funded by insurance per se, but I know that our government should NOT be in the business of picking the "winners and losers" (as someone's comment on here yesterday put it). The use of federal money - our money - to essentially take a stance on this issue when it is well documented that the vast majority terminate these pregnancies is something that the government should not be involved with. They are also in bed with the insurance companies on this idea that if we just pay for the tests now, we'll "save ourselves money in the long run". That's what really bothers me and makes me want this aspect of the bill (or the whole darn thing) thrown out.

But I do totally get your thoughts about continuing testing - it's messy to reason through for me of course. Testing/Knowledge=good. What so many people do with that knowledge=saddening.

MidWestGirl43 said...

This is such an important post. I agree with the author on so many levels. Although, I did not have any prenatal testing with my youngest child, I don't feel that all prenatal testing is harmful.

I think there are circumstances when it is acceptable to engage in such tests, if such knowledge is used to be better prepared. I do not agree this testing being used as a determining factor on whether a pregnancy will continue. As this author mentions, the target today is Down syndrome. The targets of the future, of eugenics, are limitless.

My life, and the lives or my children are better because of the experiences we have had as a result of my youngest child's extra chromosome. The way that she views the world around her is unlike anything I've ever known.

Through her examples, we have grown to have a greater appreciation of life, and a deeper understanding of the value of everything.

The love we have for her is infinite and powerful, and we can't imagine life without her.

Crystal said...

Honestly, this sort of stuff freaks me out for my sons' future. What sort of world are they going to be raised in? We need a bazillion more people like (Libby & Patti) to stand up and say NO!

Katy said...

Loved these posts - and love ALL those sweet faces!! I recognize one little beauty there at the top, Miss Abby!

I feel like I can shout from the rooftops how wonderful and rich our life is and important it is that we don't get rid of these precious souls God sends to us, but really, when people meet Grant, they feel it. Friends of ours that had never before been around people with special needs now "get it". So I suppose if I can't preach to everyone how important their life is, I'll just have to settle for hoping he touches the lives of everyone he meets and those people will come away realizing that they are worth fighting for. That these precious children are just as valuable and our lives with them just as rewarding (if not MORE) than anything we could imagine.

Leticia said...

Outstanding post, Libby, you really nailed it. By the way, "Autism Speaks" is spending a lot of money seeking a pre-natal test for autism. What ARE they thinking?

Here's what I think;
“People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!’ It cannot be denied that the price of these diseases is high—in suffering for he individual and in burdens for society. No to mention what parents suffer! But we can assign a value to that price: it is precisely what society must pay to be fully human.”
Dr Jerome Lejeune, French scientist who discovered Trisomy 21, the cause of Down syndrome in 1959. His work was used to develop the first pre-ntatal tests, he regretted the misuse of his discovery and spent the rest of his life seeking a cure for Trisomy 21 because, as he said,
“I see only one way left to save them, and that is to cure them. The task is immense, but so is Hope.”

blessingsandglory said...

Thank you to those who have joined in this discussion; for your encouragement and interesting points. I do want to address one comment that mentioned the need and importance for prenatal testing.

It should be noted that in this essay I'm speaking about the prenatal tests specifically designed to prenatally diagnose Down syndrome though in all reality, many other disabilities could be substituted. While many will argue that prenatal tests provide necessary information to expectant parents and doctors it is worth reiterating that there is no *cure* for Down syndrome. {Or cerebral palsy, etc.} Medically there is no reason to diagnose early or at all. Yes, many babies who are born with Down syndrome do have heart conditions or other complications that require immediate attention at birth, however any medical issues that demand immediate attention can be caught and monitored via ultrasound.

Again, are we willing to adjust our morals and values on the "what ifs" of this life or are we going to take the road less traveled and fight for the common good of all people? Please, make no mistake about the goal of these new tests.

-Libby

Mike Sullivan said...

That's right, a diagnosis of Down syndrome is not necessary to identify and prepare for any health issues at birth - these are identified through normal prenatal health care, as they are for other babies.

Screening is about birth preventation and saving money. If people want to know before birth, then they need to accept the consequences on using the technology in drastically reducing birth numbers. That's the real choice.

Kristen said...

I don't ever comment, ever. But I must say "Well done!" on this one! Gave me chills!

teal915 said...

Gorgeous faces : )

Margaret said...

Beautiful post and absolutely true!

Mike Sullivan said...

Here is a link to an essentail piece of reading about testing for Down syndrome, in terms of the argument that it is of benefit to the child.

http://www.facebook.com/permalink.php?story_fbid=267630549981125&id=195879623802771

Shannon said...

I had to have my baby at different hospital. But let me make it clear, it was not because of the gentic test that redirected our place of birth, but a heart defect found in an ultrasound. Anything that would require medical attention would not show up in a prenatal blood work or invasive test, at least pertaining to chromsome syndromes. Those tests do not offer any information that could help your child, it purely provides knowledge. Knowledge that then people can use to hurt the child. I refused to testing before the ultrasound, and I am positive that if in the situation again, I wouldn't do an amnio again.

Megan said...

Very nicely said. Who are "They" to decide what is best for me or my child. God doesn't make mistakes. If He were to bless me to be pregnant and my child had a disablility then I know that is what God wanted and I would do everything I could to live up to that blessing.

Sarah said...

Isn't the real issue for all of us pro-lifers the fact that abortion is even an option? Would you opposed to the test if it were merely for informational purposes?

Patti said...

I'm not opposed to it for that reason, because of my experience with Lily- this would help me decide which hospital to deliver at. I'm going to state why in a follow up post!

TUC said...

Libby, Patti,

Would you agree that the Church is too silent on this issue? For the numbers to be what they are now, and for there to even be opinion pieces stating that these tests could cause the elimination of Ds from our society begs the question... Where then are the Christians?

I am sad to say it but I think many Christians believe they get a pass on abortion when the baby isn't what they thought they should have. I personally know Christians who have aborted T18s. What are your thoughts on what the church could be doing to make it clear that pro-life means you take the hand He deals you.

--Sandra

jonashpdx said...

The political comments regarding the implementation of the new healthcare legislation surrounding this make me really sad. I have yet to see ANYWHERE in the legislation that it will "force" people to have prenatal testing -- all it does is say that prenatal care, including some prenatal tests, yes, should be part of the preventive care for mother and child and therefore paid for by insurance companies and NOT out of pocket by families.

That's it. It's also worth noting that most health insurance (excluding medicare and medicaid) will still be run by private companies after the full implementation in 2014.

As a parent of a 4-year-old with Down syndrome, the specter of prenatal testing disturbs me completely, but let's put the burden where it belongs: on making sure doctors, hospitals, and other health care providers have accurate and up-to-date information on genetic issues like Down syndrome to present to prospective parents if and when they get a diagnosis, whether that be pre- or post-natally, because even without these new tests, even without the (imaginary) forced prental testing, far too many people are choosing to test and/or to terminate kids like mine and ours right this very minute.

Myself, I'm thankful for much of the new legislation -- without it, not only would I not be able to afford the coverage my son has now, but because of it, the insurance company is no longer allowed to deny him treatments (occupational, physical, and speech therapies) that they had previously denied because of his preexisting condition.

I know that this is a hot-button issue for many reasons and hope that everyone is able to step back, take a deep, deep breath, and really examine these issues. To me, education is the key. I love Libby's line in the comments, the "common good of all people." That's what most of us are after, completely.

Brett said...

Fetuses that make it to 10 weeks and are eligible for these tests are wanted babies. The two simple blood tests recently on the market are to diagnose Down Syndrome specifically. These babies become unwanted after diagnose often due misinformation both by and for parents and advising doctors.

These tests primarily fulfill two market-driven desires, both of which are non-medical in nature: 1) satisfy curiosity; and/or 2) determine DS defect for abortion.

The tests are not inherently evil, and women should have the ability to get information about their babies as early as possible. Who pays for it is a worthwhile, but secondary, debate. We need to shine a BRIGHT light on the how our DS children are targeted for extinction, and over gross misinformation.

As Libby indicates, who is next? Female babies (already happening in our nation)? Redheaded babies? Babies prone to obesity? Heart disease? Green and not blue eyes? We need to have a national and international discourse on medical ethics that includes us regular folks, not just the uber-learned who "know what's best for us."

cara said...

Thank you, thank you Patti for being brave enough to raise this issue on your blog. This discussion needs to be addressed!! Benji (and we are so honored you put his pic on A Perfect Lily), is the love of all of our lives. I asked my children today if they think he is a burden in our family. They ALL cannot get enough of him and totally agreed that he is exactly the opposite. He is a blessing beyond words. Thank you for posting these beautiful pictures because people need to see the full of life faces of the people they are SO willing to abort. They need to see that joy in their eyes, their sweet smiles, and stare at their faces. These are people worth fighting for. They deserve life like we all do. This is truly, truly devastating that they are being targeted for this.

Libby- I really like how you pointed out in your comment that there is no cure for down syndrome and no reason to need to know about this diagnosis before birth. And this is the main group being targeted.

5boysand1girlmake6.com said...

First off I have to start by saying WOWZER on the pictures they are gorgeous! Love love love! As a mother with a sweet 2 year old with DS that had a diagnosis before she was born. I felt that was a gift to me for preparation. I hope people use this test for just that to prepare for the beautiful child they have been blessed with. I know that isn't always the case and I agree that makes me sad too. Great posts! Thank you so much for advocating for our wonderful children!
Katie

Katy said...

Jonashpdx: I don't at all think that tests will be 'forced' by the government, not yet anyway...:{ - the govt won't be in the room with that woman. But the doctor will be and when he sees that the person possibly doesn't have insurance (or their insurance doesn't cover all of the cost of the test...which I'm sure they all will someday because they'll see the "cost savings") that doctor/staff will let them know that under the healtcare act, they are able to get the test at federal expense. THAT's what I disagree with. The government should not be paying for tests where it's proven to lead to the elimination of 90%+ fetuses with DS. They know this. Also, doctors or government can't force the tests, but doctors have a lot of influence and people are nervous/scared to have a child with special needs, and if doctors have an agenda or are ignorant, they can easily be the determining factor in not only getting these tests, but influencing what is to be done about it (which is why we DEFINATELY need to educate these doctors and require that they present up-to-date information).

If these tests were 100% informational (abortion was illegal, or for some reason, hardly anyone chose to abort and it was just 'information') - different story. But the govt should not be getting involved with tests, by paying for those tests with taxpayer money, that are used to eliminate part of their population.

I would hope that they could at least reexamine *this* part of the new bill. I just can't believe they have the audacity to put this note about free prenatal screening under "preventative care."

blessingsandglory said...

Sandra - you asked if we think the church is silent on this issue...from my perspective the answer is YES!. More than once I've looked around our large congregation and wondered how we are the only family that has a child with Down syndrome. Given the statistics that Down syndrome is the most common birth defect, Charlie should not be the only child with Down syndrome going to his Sunday school class.

I would argue that fear of the unknown does not discriminate, it does not care if you claim to be a Christian or not. However, those who do claim that Jesus is their Lord and savior have been called to rest not on their own understanding, but on His. Throughout the New Testament Jesus gives us example after example of how we are called not to react but to respond. We don't know God's ultimate plan, and all too often we cry out for Him to meet our immediate needs or fix our challenges. However its worth pointing out that instead we should be more focused not on the solution, but we should be looking for what God can and will do in the situation.

-Libby

Anonymous said...

What do you think about a new Arizona law that would allow a doctor to conceal the results of prenatal testing from his patient in order to prevent an abortion?

theupsideofwes said...

Hi! I love those pictures, these children are so precious! I am 33 weeks pregnant with a child with Down syndrome. I am so happy that I found out when I was 18 weeks pregnant because we were able to mourn, find peace & happiness (rather quickly I might add), find good doctors and hospital, and not rush to find expensive day care which I may or may not be able to utilize. My son may have Hirschsprung's disease which would require a year of my LO using a colostomy bag between surgeries and there is no way I would want him in day care. I know that I am one of the few that would use prenatal testing as a way to prepare, not a way to decide if I were to keep my child or not. I love my son and from the start I didn't care if he had three arms, no legs, and a third eye... he is so precious to me and I haven't even met him yet. All in all, I don't think prenatal testing is the enemy, but it's the lack of education about our children that is instilling fear into others who do not feel strong enough or capable to "handle" a child with needs. The testing helped me to prepare for my little Wes, and I am thankful that it was available. I don't know what I'd do if he had to have OHS immediately at birth without warning that there were complications. But that's just my feelings. As I mentioned earlier, I was going to love him no matter what.

Michelle said...

Absolutely wonderful blog series. So well written and well researched. Thank you for sharing!

Mindi said...

I love your beautiful pictures. What beautiful children they are. I agree 100% with what you're saying. Abortion was the first step down this slippery slope, and of course that opens the door to all of this garbage, for lack of a more decent word. Of course these pictures only tell half the story, there are times when life gets crazy, and the children aren't smiling and dressed in clean clothes. That happens with every child, no matter if they have a disability or not. One of my dearest friends has spinal bifida, she is truly a gift from God. She's a marvelous listener, she is a great teacher, and she's a friend to share a laugh with, no different from any of my other friends. I agree that this is only the opening the can for more and more babies to be killed. The funny thing is, the joke is on the eugenicists because the perfect person they're trying to create doesn't exist.

TUC said...

Anonymous,

Have you read the law? The reports would have us believe that a law went into effect saying doctors can lie to their patients when the truth would lead to abortion...

Um, I guess if you really stretched it, that is one way of looking at a law banning Wrongful Life lawsuits... which is what the law actually is.

Doctors are not God, and they should not be sued for not finding a genetic "mistake". Tests are not %100 accurate and doctors cannot promise anyone a perfectly healthy baby and delivery.

Now if you had a prenatal test, and your doctor withheld the results or lied about the results, that falls under medical malpractice, so I don't think we all need to be worried that pro-life doctors are going to start lying to patients to save unwanted babies...

This is however a fabulous example of how information gets twisted by reporters wanting to scare the public into voting a certain way.

Anonymous said...

Protecting doctors from wrongful birth lawsuits paves the way for drs to practice medicine in line with their politics and not be held liable. I did read the law. It's like the laws people are trying to pass saying life begins at conception. Those are not anti-abortion laws, but their intent is to lay the groundwork for such.

Information gets twisted by both sides to scare voters. Obamacare will make doctors give you abortions!