Thursday, November 17, 2011

life without lily

The end of Down syndrome 

A controversial new test means disorder will become extinct from ‘eugenics,’ doctors say

Last month, San Diego-based Sequenom released a test that allows doctors to screen for the most prevalent type of Down syndrome with only a blood test from the mother. The screening is available in 20 cities and is expected to hit New York soon. Two other companies have plans to release similar tests next year. 





“What you end up having is a world without people with Down syndrome,” says Paul Root Wolpe, director of the center for ethics at Emory University. “And the question becomes is that a good thing or bad thing?”




In the past, a risky amniocentesis was needed to detect if a fetus had Down syndrome. Today, all it takes is a blood test of the mom.







Because the current methods of screening for Down syndrome, amniocentesis and chorionic villus sampling, carry a risk of inducing miscarriage, only about 2% of pregnant women in the nation undergo the screening, says Dr. Brian Skotko, of the Down syndrome program at Children’s Hospital Boston.




The safer prenatal screenings will likely mean more women will be tested, and the number of women carrying babies with Down syndrome who terminate their pregnancies could increase, if not skyrocket.






Today, 92% of mothers who get a definitive diagnosis of Down choose to abort, surveys show.




“It’s a real conundrum,” Wolpe says. “Human beings have always tried to fight and cure disease, and this tool, projecting it forward 50 years when it’s powerful enough, will make a difference in eliminating those diseases in the world.

It’s a tough call."





People with Down syndrome typically have an extra copy of one of their chromosomes, usually chromosome 21, which changes their body and brain’s development and causes mental and physical problems such as mild to moderate mental retardation and unusual facial characteristics.






Older women are at an increased risk of carrying a baby with Down syndrome -- a 20-year-old woman has a 1 in 1,667 chance of having a baby with Down syndrome; but her risk jumps to 1 in 30 by the time she’s 45.





Skotko says that because more older women are having babies than ever before, the percentage of babies born with Down syndrome should have risen 42% between 1989 and 2006. 

Instead, the number has decreased by 11% during that time, largely due to elective termination.





******************************************

Dearest Lily,

I cannot imagine life without waking up to your beautiful face every morning....



 I can't imagine life without your vivacious and charismatic personality in it~ your unique ability to charm loved ones and strangers alike with one crinkly-eyed smile.


I don't even want to think about what my life would be like without the sound of your laughter, the smell of your skin, the little games you play...






There was a time when I worried about what you might look like some day...silly superficial fears that somehow you would be so different, it wouldn't "feel" like you were mine.

I couldn't have been more wrong...



There was a time when I worried about "mild to moderate mental retardation" and what that would mean for my baby girl.

I'm finding out those fears were so unfounded as well....



...because I've learned something so simple, so obvious, in these past twenty-two months of calling you mine, that it shouldn't need repeating; and yet it does.



Love never fails.






...it bears all things, believes all things, hopes all things, endures all things.



Love never fails.



And though the times are changing...new tests and new statistics and maybe a new future for the world as we know it, I am more convinced than ever that you were no accident.  You are not a disorder, you are not a mistake, and you are not a disease to be eradicated.



You are desired, you are a blessing, and you are a gift....



Our lives were not devastated by the receiving of that gift. They were enriched and enhanced and filled to overflowing, and simply put, I would not want to experience...





...a life without Lily.



Love always,

Mama oxoxox

81 comments:

Lena said...

The thought of more abortions makes me sad.

GAMZu said...

There will never be a world without Down syndrome. Not everyone will take that test, and out of those who do, not everyone will be stupid enough to abort because of DS.
Yeah, it's a sad development. More babies will be killed. But there will never be "life without Lily."

Kiara Buechler said...

Wonderful post Patti, I am going to share it on my blog.

Elissa said...

There is no life I want to live without Abbie in it. PERIOD. I have no idea how to put it into words, but she has changed me. She has changed our family. She has changed others. I wouldn't go back to who I was, who we were, or who they were before she was born. EVER. FOR ANYTHING.

Anonymous said...

It's hard to explain, but I don't understand how this test could be a completely bad thing. I believe women have the right to choose whether to bring a baby to term. If you're against abortion in principle, I can understand your problem with the test. And I understand Lily has enriched your life, she's beautiful and wonderful (as are you!) but I don't think that occurred solely because she has down syndrome. Any baby, extra chromosome or not, is miraculous. But it is a natural human instinct to procreate the healthiest offspring - those who can learn to fend for themselves, become autonomous, and pass along genes to another generation. I'm sure there will be mothers who take this blood test and decide to keep their babies with down syndrome, but I don't see how you can condemn a parent for wanting to carry a baby with the correct number of chromosomes to term over one with 47 chromosomes. Down syndrome is, essentially, a genetic mutation, an error that the human body itself recognizes, which is why only 20% of the babies conceived with it make it to term and can live healthily. These statistics fail to remind people that choosing to abort a baby with down syndrome is also a choice to avoid the 80% chance of miscarriage, which could potentially be even more devastating to the mother. I also understand and respect your position that God does not make errors in these kinds of matters, and there's nothing I can say to counter that because I don't question or judge the beliefs of others, nor try to impose my own.

Anyways, this message wasn't intended to be hurtful, if it came off with any negative connotations that's not how I hoped it would be construed. I love your blog, I think Lily is an absolute treasure, but I also believe that this issue isn't black and white - there are innumerable shades of grey.

Leah said...

What a beautiful post on this subject. I've been thinking of this a lot and haven't yet blogged about it. But you say it perfectly in this letter to Lily. And I could really just die over the first black and white photo. What a doll!

Natalie Nelson said...

I love this.

Mrs. K said...

As always, I don't like coming to the end of your blogs. I want to keep on seeing my BEAUTIFUL Lily Anne, her siblings and read your INSIGHTS, your warm and treasured wisdom. I am ever so proud of you. You can express your feelings so openly. Something I wish I could do. Love, Mom

Heidi Ehle said...

Anonymous,
I understand your position. BUT..as far as the risk of miscarriage goes, I personally would think that God taking my baby would be a whole lot easier to live with (although facing losing your child in any capacity is a horrible thing!) than carrying the fact that I ended her life, that I took that decision out of His hands.
We all have a whole lot to learn from children and adults who have DS. They are truly shining examples of what I am pretty sure God had in mind when He created humans. In my opinion, if we all tried to live life emulating them a little bit more, this world would be a much better place to live in. Our kids can and do attend to themselves, they do become productive citizens, they vote, they go to school, they work, just like everyone else. The only limits to their abilities are those we put on them.
My world is already a better place because of one tiny girl who has changed me in so many ways. I am kinder, more compassionate, gentler, more faithful, and a whole lot more appreciative of the blessings God has seen fit to give me. Despite my initial reservations about having a child with DS, I would never trade her for a baby with 46 chromosomes.
Essentially, it comes down to the decision whether a life is a life regardless of the difficulties that may lie ahead. And my fear is this....if the world can continue to condone this "anything less than perfection is not good enough" attitude, where does it end? If you are choose to believe that it will end with the deaths of so many babies with DS in utero, who were never given a choice and never given a chance to show the world what they are capable of, you're wrong. It won't end there. There will be more tests later which will test for other seemingly less innocuous issues, all in the name of the pursuit of perfection.
Patti, beautiful post. Much love to you and yours, friend.

Anna Theurer said...

Beautiful post, Patti. Excellent photos as well. Lily is really growing up!

What I hate about this test is that it only focuses on Ds (couldn't we place a funding elsewhere such as developing care for adults with Ds or some other research along those lines?) and that unfortunately there will be an increase in abortions. I had a friend who was pregnant and wished that the test was available to her--but NOT for abortion. An amnio was recommended because the baby had a high chance of having Trisomy 18 or 21. My friend was praying for trisomy 21 because of the high mortality rate associated with t18. The thought that she would have to risk miscarriage with an amnio was scary and hence why she wanted the blood test. So I do recognize that all mothers will not abort , but still, I cannot help but think my Ellie and your Lily will be some of the only children out there with Ds.

lovemy3 said...

Beautifully said as always along with beautiful pictures of sweet Lily. I've had this test on my mind a lot recently too. My daughter had to do a lot of fighting to be with us today...there is a reason...life wouldn't be the same here without her.

Patti said...

What is interesting is that I did not state my position about this test in this post...or about abortion for that matter.

I merely lined up the words of that article, describing the test and what will inevitably result-

-against photos of Lily.

We can argue this test or argue abortion until we're blue in the face. The issue is very black and white. And sepia. And colored. The issue is life.

Denisemomof4 said...

Patti, Thank you for sharing your little Lily with us. People who do not have a child with Ds can't possibly know how special having one is. I am going to keep the faith that the aboration rate will stay the same, assuming people who like to choose a world like Hitler was trying to create will still abort, and mothers (true mothers) who have unconditional love will continue with their pregnancy and experience only the special things about Ds that we know to be true!

Rochelle said...

I can't imagine life without my girls just the way they are!

The Kirkland's said...

My husband brought that article home to me today, I was heart broken to hear about it. I wish people would just stop trying so hard to control life and make it "perfect" when God already has made it perfect! When I read the article I kept think about you and Lily, and wondering if you had seen it yet. If you ask me this is just another form of Holocaust.

Jenny said...

Beautiful post Patti!

I suppose every one has the right to take this test. And a woman who actually has it in her to abort her own baby will do so regardless of this test and its results.

My problem with this test is that when the results do come back positive for Down syndrome the medical community is being extremely reckless and careless in delivering that news to a Mother.

In my opinion if the medical professionals want to make a test available to eliminate an entire group of people that they deem as "unworthy of life", they damn sure better have some CORRECT and UPDATED information on what Down syndrome REALLY is to offer these parents BEFORE they make a decision. Anything less is just extremely irresponsible.
And as far as we all know, this is not happening. You would be surprised how little the average Doctor even knows about Down syndrome.

And really, I cant wait to see what the next test will be for! Who will they go after next?

Patti said...

And really, I cant wait to see what the next test will be for! Who will they go after next?

yup. maybe non-aryan? jews? gypsies? ...

Team Lando said...

Patti, Lily just gets more beautiful.

About the blood test - I would take the test with my next pregnancy. CVS was awful. I'd take it for the same reason I got CVS - to prepare. To prepare so that duodenal atresia was diagnosed before we fed Ellie. To be monitored during delivery so when her heart had problems, I could have a csection. You are right - the issue has many aspects. And I wouldn't trade Ellie for anything. :) Because Ellie matters despite her health issues.

The Kirkland's said...

I posted earlier, but guess I didn't hit the post button. I read this article earlier today and it broke my heart. I wish people would leave the Choice of life where it belongs, and that is in the hands of the one who created it in the first place! GOD! We need to stop chasing after a "perfect" life and accept the perfect life God has already created. If you ask me this is just another form of Holocaust

Patti said...

team lando (megan):

I actually would get the test as well..for the reasons you stated, and so that I would know which hospital I should deliver at. If I had known Lily had Ds, I would have delivered at OHSU and she wouldn't have had to be transported- away from me- that first night :(

Race Bannon said...

Anonymous - when does life begin?


Start here: We do not get to choose when life begins. The answer is real, and the answer is the same for everybody. The answer does not change with technological advances. The answer does not change in different states or political or geographical boundaries.

The answer does not change depending on the makeup of the Supreme Court.

We have to figure this out.

For some of us, this question is simple, and the answer is obvious.

If this question is hard for you, but you did come up with an answer, how did you determine it?

Check you answer, go back to the start.

Anonymous said...

This test gives people a choice, and choosing to abort a fetus that may not survive to term, that will have lifelong struggles, need more resources and care, is not always a weak decision. This test won't eradicate down syndrome, it will simply allow mothers to choose their journey in a much safer manner. It isn't about screening for race, or eye colour, or creating a perfect human. Nobody is perfect, regardless of chromosome number. It's about a mother wanting to carry healthy baby to term. And I believe there is grey area because not everyone believes that a life begins at conception, or that a miscarriage means that the baby was taken by God. Perhaps those of faith are better suited to raise a child with Down Syndrome? But for those who are not people of faith, perhaps being alerted that cells have mismatched and made a mistake when forming does not mean a death sentence. It simply means a do-over. This is where opinions clash.

The mothers who choose to keep their babies who have DS are probably, arguably, going to be much better mothers to them than those chose to abort their DS fetuses. I don't believe for a second that the 92% of mothers who choose to abort their baby do it because they feel their unborn child is not "worthy of life". Women abort fetuses every day for thousands of reasons: lack of funds, because they're too young to raise the baby, no partner. If this isn't a controversy of pro-life vs. pro-choice, why shouldn't the health of the fetus and the diagnosis of a chromosomal abnormality also be a legitimate reason for consideration?

And Patti, this isn't directed at you, or at any one in particular. I've just seen both sides of the debate. As I said before, I'm not trying to be negative, but simply point out the other side of the coin in a respectful manner.

Sara said...

Race - are you saying that life begins when two cells begin to multiply? It just seems contradictory, that it's biology that dictates when life begins, and yet if life should end before term, it's God taking the baby.

If life begins biologically at conception, and the cells multiply incorrectly resulting in a chromosomal disorder, biologically the human body knows to reject this fetus and abort it naturally. Survival of the fittest, the body knows this fetus is not optimally healthy to survive outside the womb. 80% of the time, biology does this, without the choice of the mother. So why is it any different to allow biology to alert the mother through this test, and have a doctor do what the body would do itself anyways? What it was designed to do in this situation?

Patti said...

sara: if the body is "going to do this itself anyway"- why the need for abortion?
maybe I'm missing your logic.

Shauna said...

Grr....did you note the quote from the article that "typically someone with Ds has and extra copy of one of their chromosomes, usually chromosome 21" Really? do they not do the simplest of research before writing? Cause last time I checked Ds is ALWAYS because of an extra 21st chromosome in some form. And as for anonymous....well if babies with Ds miscarry because of a "genetic mutation" than if they don't doesn't that mean that they are worthy of life? Oh and the idea that killing your baby will save the pain that MIGHT come IF it dies is completely absurd and a total cop-out argument. As for the question of when life begins...if you don't have VERY definitive scientific proof (which we don't) that it is not at conception than why should any one (or group) human being get to determine when it does? Okay rant over. Patti...lovely job on the post and Lily is beautiful.

Elissa said...

Sara

I sort of get what you are saying, but I must say that I believe we should leave biology or God, or whatever it is you or I believe, to do its thing on its own. My baby with DS did survive, and she is thriving. She is hardly any different than her older sibling in any way and has been no bigger a burden in any way either.

So clearly neither God nor biology felt she was not "strong" enough to survive. I would venture to say that a VERY large number of terminated fetuses that were positive for Down Syndrome would also have survived and thrived. So, while I can certainly see where your argument comes from, I do not feel it is an adequate argument in this case.

All that said, I do NOT want to engage in some personal debate. You believe what you do, and I believe what I do.

I do agree with Anna's comment that one of the biggest problems is the way parents are told about Down Syndrome and what it really means for them when they get a positive diagnosis. The information being given is often false, uninformed, inaccurate, etc.

Elissa said...

Shauna-I always hate that same argument that they would be avoiding pain and hurt that might come later. Seriously? I mean, we all experience pain and hurt and loss for varying reasons. I lost my mom to ovarian cancer way too early. Should she have been terminated as a fetus to avoid that pain and loss? We have a friend whose sister in law was severely injured in a hiking accident and is now unable to walk, guess we should have ended her life as a fetus because her husband and family would have to take care of her?! I just don't get that argument. What about people who have genetic tendencies to obesity? We kill them off too? Being obese is expensive too... Get my point? Where do we stop? NO ONE would be "fit for life".

cathy said...

Beautiful Patti

xoxo
cathy

cjsmomma said...

Patti, I have followed your blog for a while now and absolutely adore Lily and your family values. In regards to the article/debate about the test, are they certain that the new test is 100% accurate? I had the Ds testing done while pregnant and mine came back a strong positive for Ds. Turns out my boy was NOT born with Ds. It is very scary that women may abort a life that has nothing wrong with it, let alone aborting a baby with Ds. I chose to carry my child and face whatever I was given by God, and I am so thankful everyday that I did. I would have loved him regardless of his health, abilities, extra chromosomes, or whatever else God handed me. I admire you for your strength and again for your values and faith.

GAMZu said...

To anon: In China they abort girls. But it's the mother's choice, right?

Down syndrome is an imperfection? You're right. It is. But I don't want to live in a world where imperfect people aren't allowed to live. Who *is* perfect??

I vote that doctors develop a blood test to diagnose future murderers, child abusers, drug addicts and general criminals. Imagine how much money we'll save not having any jails... how much more pleasant life would be.

Why is it fine for those fetuses to be brought to term, and not DS fetuses? How does a person with Down syndrome negatively affect the world? Is he/she worse than a criminal?

I'll tell you why there is no test like that. Because it's impossible to predict. Even if eventually we will find that all criminals have a common characteristic in the personality section of the brain, and it's testable in utero... would you abort your baby because of it? No. Because everyone deserves a chance at life. People can overcome even the worst predispositions.

Down syndrome is by far not the worst trait a person can have.
If you want to "clean up" the human race, why not target terminal illnesses? Find a way to test for predisposition to cancer, and abort those babies. Cystic fibrosis. Batten disease.

Next: test for autism, adhd, dyslexia. Right? I'll be waiting on the test for determining future murderers.

Ginger said...

Amen, amen, and AMEN!
And oh my goodness, those adorable bottom teeth. Absolutely precious!

Roo's Mom said...

Great post Patti! I love how you just placed the objective statements along with pictures of your darling daughter. I have posted comments and written on my erstwhile blog over and over again about this very issue because it torments me no end. It is a great and sad folly to try to seek "perfection," and be willing to weed out any unborn child that does not meet that definition (and yes, what is next as pre-natal tests become more sophisticated?). Thankfully we parents and others who love our children know the true meaning of perfection and we know in our hearts and our minds that our children do meet that definition! Thanks for doing this.

Jennifer said...

I love these pictures. I have never met Lily but I feel sad at the thought of a world without her.

Lora said...

Lily is SOOO cute, Patti! ;0) Love this post. When my son (who was born with a neuromuscular disease) was 6 years old we became pregnant with our daughter....we were actually at an appointment for our son when a doctor actually asked me if I was going to do any genetic testing to see if my child had the same disease as my son did and then abort the baby if I found that she did. I firmly believe that every child is a gift from God and He is the giver of life! I know this is a very touchy subject so I will just stop there. Thanks for this post!

Anonymous said...

This is armstro3 from babycenter. I love all the beautiful pictures and beautiful sentiments about the precious value of your Lily's life. Anonymous, be careful assuming children with Down syndrome are not "healthy." It may be semantics, and perhaps you mean "typical," but my child with Ds is very healthy. Sure our kids are more prone to some health issues, but that alone is not enough to hang your hat on. My son had open heart surgery at 4.5 months old and he is healthy. I also agree with other posters that hiding behing the high miscarriage rate as a justification for abortion is a cop-out. I would not be unkind to someone who chose to abort because it was their choice and they didn't want the child or felt they couldn't handle it. I guess my issue is we have to be honest with ourselves. I was devastated when I got my son's prenatal diagnosis. It isn't what I wanted, but I made the choice I could live with because I wasn't going to hide behind some excuse to make myself feel better. I will never see aborting a baby with Ds as some brave pain-sparing decision, but that's my opinion. That being said, being tempted by so many doctors to abort my baby was very upsetting and confusing and would have been really tough if I were not strongly set in my beliefs and had a husband who would be willing to divorce me over the life of this child-thats how much he valued it. I love my son. Life is hard and very gray. I understand how you feel because I might have agreed with you before my son was here. I guess seeing the value of a person with a disability sometimes comes from being thrust into the situation and maybe outsiders can't fully understand sometimes.
-armstro3

Anonymous said...

Armstro3 again. I want to clarify that I am not "the anonymous". I apologive for posting under "anonymous" also. I am not tech savvy and it was the easiest way for me to be able to join this discussion! Sorry for any confusion.
-Armstro3 (Alysia)

angie said...

It's late, so I don't have it in me to put my thoughts into a well-developed response, but I can say with conviction that we humans only get ourselves into trouble when we try to play God. Let God be God- he does it a lot better than us. :)

Leah said...

Nice post to go along with the pictures

Race Bannon said...

Sara -

I wasn't saying my belief on when life begins. I was saying it is important that we figure this out, we must discuss this. It is important that on the topic of abortion, this be determined first. ‘Choices’ can’t be made until this is known, right?

For those that 'believe' live begins at conception, abortion is the death of a life. If that happens naturally, it is still a death. But, “biologically” we all die. If a human purposefully ends the life of another human, it’s a homicide (that is the definition of the word).

So, my point is that we must consider when life begins. Some like to say it is when the ‘baby could survive on its own, without the mother.’ Do you know any baby that could survive on its own without the mother? I really needed mine. Is it when it has a heartbeat? Is it when it “looks” like a human?

My point was that this must be figured out before all other arguments (such as: do we want humans with birth defects, syndromes, etc.), because if it was a “life” - does any of that matter? Does it matter that a baby may not walk? Does it matter that the baby will have heart problems? For those that believe life begins at conception, it is the murder of the most vulnerable, the most needy. For those that believe life begins at a later stage - they need to identify that stage, because if they’re wrong…

My point is that life begins - and when life begins is a fact, not an opinion. I’m not giving you the answer, or my belief. I’m saying that it isn’t determined differently for different people. If it does not begin at conception - when does it begin, and how was this determined? We need to know the answer, not just have an opinion on it.





Please Sara, and Anonymous, go back and read Patti’s blog post. See that the numbers of abortions, the statistics, don’t jive. What is being aborted an unknown, but clearly high, percentage of the time is what you see in those pictures.

nicole said...

Patti ~ an amazing and beautiful post that is filled with so much truth! I love truth. "The truth will set you free" . . . just as it has freed you to see Lily for who she is, a daughter of the King worthy of unconditional love, tender care, and a home where she is treasured.

We often hear and say "children are a gift" ~ do we mean it? Or do we only accept those "perfectly" packaged?

And to Anonymous, abortion is a death sentence not a do-over. When a woman walks out of an abortion clinic, she is no longer pregnant.

teal915 said...

I thank God every that we have Kamdyn in our lives. She makes it so much brighter. Love your post.

gretchen said...

love.

Griz said...

Patti- I saw this article the other day and it made me sad. Maybe they should read your blog or get to work w/ people with DS to see how amazing they really are. Or they could watch this...http://www.youtube.com/watch?v=sbnrAcC4hx0.

This is a video made by the older sister of 2 kids with DS that were adopted. One of them may be familiar to you as she was the first Reece's Rainbow child adopted from her region. Anyone that watches it & then labels DS as "disease" needs some new perspective. BG

Lynette@ A Hodge Podge Of Randomness said...

Patti- Beautiful post and beautiful pictures of Lily! Before our Sweet Pea was born, having a child with Ds never crossed my mind- I'm young(ish), healthy... But we always knew no matter what, our baby was our baby and no test would change that.

I can understand families wanting to know so they can prepare, but I can't understand wanting to end that life. Drs need to step up and start providing accurate information about life with Ds- the positive and the negative and then let parents know there are others out there that would love to adopt babies with Ds. Abortion is not the answer, but too many see it as their only option because that is all that is presented to them.

L.A.C.E. said...

This breaks my heart. As does some of these responses. Anonymous for a start. I don't know if a person I know wants this shared, so I'll keep it as vague as possible while still getting my point across.

I understand that abortion is needed in some cases. Life threatening to the mother. So I cannot say that I am anti-abortion. I do feel this test would lead to a jump in abortions because a child isn't how a parent feels the child should be.

I am honored to have met the most amazing woman in the last year and a half. She was pregnant and received a test saying that her child was destined to pass away because of a genetic defect. The doctors were willing to abort. The woman refused. Hoped that they were wrong, but knew that this was her baby no matter what. For whatever the reason God chose her to carry this life for however long. Her baby passed away while still in the womb last week and she gave birth on the weekend. I don't know how anyone could be so strong but by the grace of God. This is true strength and what motherhood really is. Loving that child no matter what. Children that are not born the way society thinks they should be and yet are raised by these amazing parents show the world there are kinder and gentler parts to it. This testing will decrease this fact.

I'd also like to state that just because a person is what society feels they should be, doesn't mean they really are the "fittest". Most times they have more issues than someone born with an extra chromosone.

Patti said...

All respectful views are welcome here...just leave your name. If you believe in something, own it! :)

Lori said...

Just a thought...it's funny how people will call cells on Mars "life" and spend lots of money to prove it - we are not talking about human cells, we are talking about single celled organisms - how is it that those cells are "life" but 2 human cells JOINING together and multiplying to form a baby isn't life? And it's funny that people can argue that the "goop" that we supposedly evolved from is "life" but 2 human cells coming together and evolving into a human being - be it as perfect or imperfect as it may be - isn't life - if people can visualize humans evolving from goop how is it that they don't see the life in an embryo? What happens when science decides to test for things like diabetes, cancer, depression, ADHD, epilespy, Chron's Disease, Autism - heck why start out life at all if the baby isn't perfect? I seem to remember a man named Hitler who had a similar idea - only he was CHOOSING to end whole races of people. Just a thought...

Lisa said...

Beautiful post about Lily but then again Lily is so beautiful you could post excerpts from the phone book with her pictures and I'd get teary. What I see when I read your post is totally unrelated to abortion as a decision. It is related to it being impossible to know the person a fetus will be from a diagnosis. Most people in the world who haven't been in close contact with a child with special needs can't understand how rewarding their lives can be. My daughter taught me that - yes raising her may be harder than it is for some but she is not in any way a burden to us. My life & the life of my extended family members is better because we all in some way understand more about what makes a person beautiful. I understand the reasons for the test but it hurts me to know so many people will abort because they don't think they can "handle" a special needs child and so so many of them will be wrong. I know because that could have been me and I thank god EVERY day that I didn't know until after I had a sweet baby to hold, who captured my heart and told me everything would be OK with one look.

Frank said...

"Women abort fetuses every day for thousands of reasons: lack of funds, because they're too young to raise the baby, no partner. If this isn't a controversy of pro-life vs. pro-choice, why shouldn't the health of the fetus and the diagnosis of a chromosomal abnormality also be a legitimate reason for consideration?

Is you serious? Lack of funds? That is a reason to not buy a new TV, not to kill a child. Too young to raise a child - old enough to make one, old enough to raise one, and what about those who 'never grow up' (oh, and if "It Takes a Village", isn't there anybody in the village old enough to help out?) No partner - check your biology (yes, two parents is optimal, but not required).

The President of the United States was born into a less than optimal family, he did okay. Give the kids a chance.

Tim Tebow may not make the Hall of Fame, but he has brought joy and happiness to millions (who live outside of New York).

I'm making light of a serious situation, but I like what Race said - where do you draw the line?

Patti said...

oh frank, I wish you'd just be...frank.

ha.

Stop Double Speak Today said...

Any baby, extra chromosome or not, is miraculous.

Down syndrome is, essentially, a genetic mutation, an error that the human body itself recognizes

Only the Sheppards said...

This was perfect. Absolutely perfect. Prior to having a special needs child I was absolutely, positively sure that a less-than-perfect child would be the worst possible outcome of pregnancy. (I don't know how far back you've read in my blog, but I addressed it in http://onlythesheppards.blogspot.com/2009/09/hello-boys-and-girls.html)

I read a quote the other day that said "Faith is trusting in advance what can only be understood in reverse." What a product of God's grace our children are!

Laura said...

Love, love, love this!

Heidi Ehle said...

Let's be honest with each other and ourselves here. The BIGGEST reason that women abort a BABY with DS is fear. FEAR. They fear they aren't good enough, strong enough, financially stable enough, or mature enough. They fear what people will say. They fear all of those unknowns that come along with a diagnosis of DS. They fear that their kids will be mentally incapacitated, physically malformed, unable to ever function in the real world alone...children who will never grow up and will require care their entire lives.
I know this for a fact. I had every single one of those fears myself.
However, whether you choose to believe in any type of higher being or not, the facts are that every single one of those fear driven assumptions and worries are WRONG. You can argue until you are blue in the face that my daughter and others like her are defective (and regardless of whether you come straight out and say it or not, that's what you and so many others allude to) and I can guarantee you that there is not one single thing defective about her. She is beautiful. She is smart as a whip. And she has been out to set this world and their preconceived notions about DS on their collective asses since long before she ever took her first breath (sorry Patti!). This is a baby girl who, just like you said, was given very little positive prognosis. Everywhere we turned we were given bad news again and again. The lists of things that we were told she would never be capable of doing are seemingly endless. Yet, she has already started doing a whole lot of those things.
None of us...not one single mother of a child with DS....believed entirely that we were strong enough, or ready even, to care for our kids starting out. The difference is that we all realized that in life there are no do-overs. Its not as easy as erasing a "mistake" and trying again. Abortion doesn't erase the fact that there was once a baby, whether the belief of the one having an abortion is that the baby was created by an error of cell replication. The consequences are long lasting and often devastating.
Loving a child makes you capable of doing a whole lot that you would never believe yourself capable of.
Those of us who have a strong belief in God aren't more suited to being mothers of these angels. And I know that in my case, at least, that belief was not nearly as strong as it is now BEFORE I looked into Lydia's big blue eyes for the first time. Before I watched her fight to live. She has shown me not only that there IS a God but that SHE values her life and WANTS to live.
No, we're not more capable, better suited, or perfect. We're just every day average moms who see the beauty in the gifts we have been given and who strive to be the very best we can be by living by our children's examples.

The Kirkland's said...

cjsmomma,
Regarding your question of "do they know if the test is 100%" the answer is no. I read another article about the test and the phrase it exactly like this "it is near 99% accurate."
Which makes me question how far up they are rounding that % to make it near 99%.

Heidi Ehle said...

Just a few more things that I have learned both from experience and from oodles of anatomy classes that I have taken in my quest to become a nurse.
For those who believe that life doesn't start at conception, were you aware that not only does a 6 week old fetus have a heart beat but that there are definable regions of the brain? Those tiny brains do not only have definable regions but they are whole.
And at our 12 week ultrasound, the tiny bean that we were being encouraged to abort was SUCKING HER THUMBS. Sounds like a baby to me, regardless of what the medical community tries tell us all as an excuse for the murder of innocents.

Danielle said...

Makes me so sad. Abortion is never right. Give your "less than perfect" baby to me. I'll raise it. Give it to my sister who can't
Ever ever
Conceive a child of her own. Put it up
For Adoption..Geez.... My sister
Is tryimg to adopt... Adoption agencies help pay living expenses, medical Expenses,
Counseling etc! What's not to afford?????

Off subject... My two cents: it's not " a disease" so don't lump it together with diseases. It's not something you can catch, or even pass on... It's a person FIRST, then a disability. I know there a waaay deeper discussions going on here in the comment section... I just get annoyed that the article (and many ignorant people) lump disabilities Into the same
Categories as diseases.

the three wise menn said...

Anonymous,
Your logic for aborting because of 'lack of' something or 'too many chromosomes' does NOT hold up.
There is a waiting list in the United States for adopting children with Down syndrome.
I say this while sitting in a room with my daughter who had surgery 36 hours ago to repair a coarctation in her aorta;a daughter who's birth mother knew that she loved her enough to give her life, and did not have the emotional or financial resources to be her Mama.
I'm certain that your mind is already made up about abortion and whether it's right or wrong. And I'm certain there is nothing we can do to change your mind.
But as the Mama of two children with special chromosomes (my first one has a genetic mutation on her 17th chromosome) I really can't see how their chromosomes being different than mine make them unworthy of life. My three year old has brought more joy to our family than I ever could have imagined as being possbible. And my one week old daughter sleeping in her Papa's arms right now is well on her way to making my heart runeth over with joy.
NO child is unwanted. Just because a parent chooses to have an abortion because she doesn't want a baby, does not mean that there isn't a family sitting in their home yearning to bring that same baby home and take care of him or her.

All right, I could continue this for quite some time, but the bottom line is, if you are pregnant and not certain you can care for your child, let me know, we always have room for another sweet thing in our home. :)

Andrea

Sarah said...

Patti, I love a good discussion with respectful views. We need to have more of real conversations in our country. I am pro-life, but I think anon was very respectful, logical and consistent in her views. She does not think abortion is killing a child obviously because she thinks it a woman's right to choose. Since I'm not advocating rape, I think the woman already chose when she had sex. I do not have a child with DS, but have to be honest. When I was a little girl, a woman down the street had a child with DS and I distinctly remember her telling my mother than she would have had an abortion if she had to do it over again. that little boy is grown and still lives with his mother; I hope she has changed her mind. It is only through you all beautiful mothers that I've learned differently, and I'm so glad I was not faced with that decision because I might have chosen the wrong decision. Because of you if I win the lottery, I will adopt as many kids as possible through RR.

Patti said...

Oh Sarah, your comments always bring tears to my eyes:) xoPatti

Shannon said...

I know this will never accomplish anything. But anon, I just want to let you know thousands upon thousands of women who abort live with unimaginable guilt and depression. If it was not wrong, why would it cause such an effect? I like to interchange the word abortion with selfish. Our law allows women to be selfish. You know we were told to not hold our breath our daughter would make it to birth? Encouraged to abort her because she had such a bad heart defect? Which two months later, that heart defect was gone. She made it to birth. Doctors are wrong. Frequently. So should I abort on a chance they are right? I would have thrown away a perfectly healthy life. I would have thrown away the love if my life. I should abort because maybe my baby might die? News flash, everyone dies. It's the risk that comes with being born. maybe no one should ever get pregant again so no one has to go throw any pain or loss? See the danger of being selfish? Being a parent is not about you. It's about the baby. Making life as good as you can for your child. And even if the prognosis says the child won't have a typical great life, I can asure you, along with the thousands of people with Ds that are living, life is better then never living at all. There is my two cents

fuzzy said...

I have to agree with anonymous. We choose to abort for various reasons, but you are presuming a belief in a deity of some sort and therefore presuming that this anonymous and non-existent being would therefore be "offended."

If you choose to have such beliefs, you are of course willing to defend them passionately. I do understand wanting to attribute characteristics and meanings to random chance, but requiring that all choices be made on such a basis is rather----ridiculous, don't you think?

I agree that kids with DS can be wonderful. I also know that those kids grow into adults with their own challenges, and a majority of the time require significantly more support than NT children and adults do. Not everyone is prepared to provide that support, and truthfully, society can ill afford the cost. We have finite resources, and how we choose to allocate them is an issue. Requiring women to carry to term and then raise a child they don't want is not a wise use of those resources.

And while Lily is beautiful and funny, had she not had DS, she would be significantly more advanced by now. If you couldn't stay home with her---and many women prefer NOT to be tied down at home with children (and/or are the sole support of their families and cannot remain at home)---it would indeed be quite a burden to find appropriate care.

Patti said...

fuzzy: so where do you draw the line? "normal" children can develop diseases after birth and become a "burden" to society- should we end their lives as well? What if there were a prenatal test to detect cancer? Or Alzheimers? Or any other "syndrome" that rendered someone- in society's eyes- a burden?
I agree that not everyone is prepared to provide the support we do for Lily. Thankfully, there are multitudes of families waiting to adopt children like my Lily. Do the research.
And this "society" you are talking about did exist at one time- the place where only perfect, non-burdening citizens could exist...I believe it was called Nazi Germany.

Patti said...

p.s. you might like to read Andrea's words, several comments up from yours.

Jenny said...

I dont really want to be to involved with this debate...But...I just wanted to say how sick and tired I am of hearing people throw in the whole "Burden to Society and the Cost and the Wasted Resources" Statements...Uggg.

The day MY tax dollars stop going to providing three meals a day, rec centers and secondary education programs, for Rapists, and Child Molesters, and Murders who sit in jail...THEN people can feel free to bitch and whine about their tax dollars helping to provide PT and OT for my son.

I mean which out of the two above would you pick as wasting Societies precious resources?

Also to "Fuzzy"...That was kind of a low blow to bring in Lily's development like that...We are all perfectly aware had she not been born with Ds she would be further advanced...But who gives a shit! What did that one sentence have to do with anything, other than to maybe hurt her Mothers heart a little.

Patti said...

THANK YOU, Jenny.

:)

Only the Sheppards said...

I have long said that if, as a society, we decide to start euthanizing all the people who are of low intelligence and are a drain on society, we should start with the House, then move to the Senate ;)

Children are, inevitably, the only one of society's precious resources that matters. Every generation to come will be due to the children we raise today. Maybe a world without children with DS, and a world without extremely premature babies like mine, and a world without children with cerebral palsy, and a world without children with autism... maybe those worlds would have more money to buy more things, but they would be missing many of the values and gifts that are much more important than money.

And, you know what, I don't care who you are, or how healthy you are, or how many chromosomes you have, I've worked in health care long enough to know that nothing is promised. The only difference between a disabled child who has not yet been born, and an adult who has just had a car wreck/stroke/heart attack/etc., is that the child's future is filled with possibilities. An adult, well, hell, if you haven't cured cancer or somehow improved on the world by living, odds are you probably won't. You'll just get older, and sicker, and die, all the while using those precious resources we don't want to set aside for children.

Because that's just the way it is.

Shauna said...

Fuzzy...wow, just wow! What a jaded, sad, uneducated human being you must be. Actually nothing you say lines up with anything that anonymous said, and her comments were much more respectful to Patti, Lily and humanity than yours. You better hope to my "imaginary" God that you never get judged by your own standards lest you be found guilty of "wasting resources" (whatever that means) and be terminated. I'm sorry but whether or not you believe in a higher power does not make you the decider of who and what is worthy of life and "resources". Like Patti said...a guy named Hitler tried that once...are you saying he had the right idea?

TheFoleyFive said...

I Read thru all the comments, and Anon seemed sincerely...wrong. but sincere. however fuzzy...perhaps this describes your morality? your conscience? either way...I was most struck by the disrespect of coming onto a mother's blog and confronting her baby's delays,suggesting her child will be a burden and in comparision to her siblings, "less"... Who do you think you are? Further more, I have three (almost four) little babies at home, I stay home with them...I'm not tied down to them, it is by far the most exhausting, fulfilling, altogether marvelous "career" I have ever embarked on. In today's society, yes DS is looked at as an issue, but really, its an issue of convenience, an issue of self-seeking indulgence.
Will Lily need more care than the other nine? yes. Will this at times cause more strain, absolutely. does this mean she didn't have the right to be born. Not a chance.
The argument, God aside (although your disbelief in him matters little, because, unlike the tooth fairy, your subscription to his being, or lack thereof are of absolutely no consequence.)is not only a religious one, it is a moral one. Where, as a society, do we decide that we will determine who "deserves" the right to live? I have a brother who is now a paranoid schizo, he spends his days absorbed in movies and his nights restless with paranoia, should he have been aborted? Were the 18 years of his life before this diagnosis not worthy of life? Is he still no longer valuable because he doesn't contribute like he used to?
No.
The problem with these "test's" and subsequent abortions, is that they diminish the value of life. Your's, mine, everybody's. the sanctity of life is a precious thing, and if we stop protecting it and begin to eliminate who qualifies for it...as a society we digress into a scary, grey, rather "fuzzy" moral code that will only begin to lump other "abnormalities" into this group of acceptable terminations and begin a downward slide into a weird gattatca-esque society that moves beyond chromosomal disorders and starts including social inconveniences.
However, I have a strong inclination you're a liberal..so really, I just needed to get this off my chest because I highly doubt you will change your mind.

CKopp said...

Fuzzy - It is good that you give your comments. Sarah is right, we need to have discussion, and see other's viewpoints. Jenny, don't be afraid to be in this debate, be involved, people want to hear you.

Fuzzy - in total, there are infinite resources, they are not finite. Sure, each of us has our limit, but if total resources are finite - how do we keep progressing? How do we keep creating more? How did we get our massive information and industrial economy, which started out agrarian, and hunter gatherer before that? Because resources are unlimited.

Understand that a person living below the "poverty level" in 2011, has things and opportunities that could not have been dreamed of 100 years ago. Unlimited access to information on a touchscreen phone. You can apply for college, take classes, and get a degree on an iPad, from your home, in areas of study that did not exist 50 years ago.

Fuzzy - you can take "God" out of the pro-life/pro-choice debate, and the basic arguments remain the same. When is it right to take another's life? When YOU believe it is not cost effective? That is too relative to be the deciding factor. Who decides what is a "wise" use of resources? The mother you say? Then where do you draw the line? If I give free financial advice, would it help?

Fuzzy - All we are saying, is that we believe once you have created a life, there is no 'cost' too high to save it, there is no burden to heavy to bare to protect it...and if you read the other comments, it doesn't even have to be OUR baby, we are willing...

Chaya said...

There is good in this test, just as there is good in amniocentesis. Tests like this are incredibly important in situations like my mother's; it was important to see if there would be issues with each of her pregnancies because we lived in Alaska, and as a result if anything were to go wrong, she would need to give birth in a hospital that was prepared, i.e, one in Seattle instead of Anchorage. Amniocentesis is risky, and that is why this blood test would have been great for her.
Amniocentesis led to my little brother being diagnosed prenatally with Down Syndrome. He had heart defects and brain issues, as well. However, when he was born, the brain issues had gone away, he did not in fact have Down Syndrome, and his only abnormality (besides allergies and severe eczema) was a little heart murmur.
My little brother, Lior, is now fifteen and a sophomore in high school. His IQ has been tested at a genius level, and he is a prodigy in both art and music. This is not to say that his life is worth any more than an individual with Down Syndrome, but he is a reminder that such tests do have the ability to be inaccurate, and that's terrible. My parents were told that he would likely not survive to term, that he would never achieve anything in his life and abortion was a good option for them. They decided they'd deal with whatever came their way, and now Lior dreams of going to Vanderbilt and becoming a plastic surgeon...

All that to say, I think the test can be a good thing in certain situations. But it's heartbreaking to know that it could lead to more abortions.

fuzzy said...

Or when is it a life? When it is capable of drawing breath unassisted, perhaps?

You believe that life begins at conception. I believe that life begins at birth---and to be honest, I have grave doubts about salvaging the massive numbers of premies that we do now. Genetically, it is a disaster for our species---we are encouraging reproduction by those least able to reproduce without technology.

I am glad you like to stay home with the kids. I don't. I see no advantage in reproductive technology which makes me no more than a baby carrier. Birth control fails, and circumstances change. Abortion is a perfectly legal and viable option and needs to remain such.

Jenny said...

If you believe life begins at birth why do you have "grave doubts" in salvaging a baby born premature? I mean, it HAS been born afterall right, and according to you it is now a living being...And yet, if it needs assistance breathing you STILL feel it is unworthy of life.

I pray to God you are not a nurse. Because I cringe just thinking of you standing over a premature newborn and deciding how much you want to help that baby survive and if they are worth the effort.

Also...Since when is life ONLY about reproducing?? If you cannot produce offspring you serve no purpose to the human race? I guess there are a lot of worthless people on this planet then...All those who cannot concieve or choose not to have children to name a few.

Only the Sheppards said...

Fuzzy,

I can only hope your lack of compassion is not passed on in your gene pool. In our eyes you are much more handicapped than our children.

nicole said...

Sometimes I think it's hard for people to value life when they do not feel respected and valued themselves. Every life is of equal and great importance. And that goes for your life as well, fuzzy.

cara said...

WOW! I am just now reading all of these Patti. I think that what we believe is going to come from what we believe about God and creation and where life truly begins as Race brought up. I KNOW that God does exist and has created us in His image as the Bible states. And the only way to God the Father is through His Son Jesus. I say this first because He transformed my life miraculously, and I can speak without a doubt that He is real and ALIVE and truly does have a sovereign plan over His entire creation. So, for me to hear that people with down syndrome are mistakes or due to genetic error just breaks my heart. Even though we live in a fallen world, God makes no mistakes. And I know that He is truly in control in spite of all the mistakes we have made. Sadly, I once believed that abortion was a good thing. I believed that a woman had the right to choose. I did not understand that life began at conception. I thought that it was just a blob in the beginning due to lies that I was fed. I believed like the world. I was lost. I was in bondage due to the lies of the world. I was fooled. I was blinded. Thankfully, I never did abort a baby. But I hate to think what I could have done. I watched friends abort as a birth control, and still today, they suffer from emotional issues due to that devastation. I changed because I came to faith in Jesus Christ, and He gave me a new life in Him, and He changed my heart about abortion to conform to His perfect plan. I cannot thank Him enough. He opened my eyes and set me free. SO, I think that it all comes down to what do we believe about God, His creation, and where life truly begins. And do we trust Him with all life that only He can create.

Oh, and our Benji with down syndrome has blessed our whole family beyond words. I cannot imagine life without him. And yes, my hubby prays to have another baby with down syndrome. And we would LOVE, LOVE to adopt kids with down syndrome as well. These children are gifts from God, not mistakes. NOT errors. They are special gifts from God. We throw them away like trash, and we are going to have to give an account for this one day. And not just babies with down syndrome, we do this with so many babies. SO sad that down syndrome is really being targeted for this, though. It is not a tough call for me. A world without down syndrome would not shine as bright. We would miss SO much. I could go on and on. So, I do not know what I think about the new test. It may help pre But I will be sad if it causes even more abortions. I don't think I like it because of that. I realize people would like to be prepared. I chose to not test with Benji with the test they now have. We had no idea he had down syndrome. We allowed God to guide us with our birth plan, which He led us to do at home for our first time. He was miraculously born healthy and thrived. I am thankful that we did not know because then we may have had the doctors jump in and try to plan the birth for us, etc., etc. I guess that debate could go back and forth due to experiences. But I really will HATE to see more abortions.

LOVE, LOVE, LOVE the pictures of Lily Patti. Beautiful. Love you, Cara

cara said...

Oh, and now I am really reading Fuzzy's comments.

Fuzzy- my heart aches for you. I was where you are at one time. I believed like you believe. I was fooled and bought the wisdom of this world over the beautiful wisdom of God. His Wisdom will be foolishness to most people of this world. I pray that He will open your eyes as He opened mine. And only He can do that. Only He can truly set you free and give you a firm place to stand. He can give you true, sincere joy where your heart is hard. I pray for His grace, mercy, love, and truth to fall upon you. If He can do that for me, He can do that for you. He loves you more than you can possibly know. I do not deserve the amazing grace He has showered on me. I pray that for you because I know that you are hurting in so many ways without His love in your heart. It is dark, but He can bring in His light through Jesus and set you free and give you an everlasting foudation in Him. I was where you are. I could debate a pro-choice debate with passion and an unexplainable intensity. But I was wrong. I was lost. And it was not only in my beliefs about life. I needed God! I was empty. I had no faith. And truly there is no hope for life without faith and knowing why we are here and where we are going. I am going to truly pray for you everyday; I mean that. I want you to be set free. I want you to know God through Christ and be able to walk with Him and abide in Him and and experience His unfailing love. Much love to you.

Race Bannon said...

Fuzzy - Your logic is fuzzy.

"Genetically, it is a disaster for our species---we are encouraging reproduction by those least able to reproduce without technology."

Serious? You don't understand genetics do you? You think being premature is passed through your genes? In your lab you identified this gene - that's amazing, please share your technology.

Oh, and on the topic of technology - what is technology? When we learned about germs and bacteria, and started washing hands prior to delivering babies (and prior to routine surgery, etc.) - and viable birth numbers increased, was that technology? Is everybody who lived after that a drag on our gene pool?

Here is a riddle for you about genetics. If people who don't value life don't have children, and people who would give their life to protect the young have, lets say SIX or TEN children...for how many more generations will we even have to have this debate?

Beth said...

Patti, absolutely the most beautiful, heartwarming post about the beauty and complete joy that our babies add to this world! I hate that there are people that feel the need to troll our blogs and share their nasty opinions. Why do they even spend the time seeking us out? Honestly, I instantly delete every negative comment that some these poor, sad blog dwellers leave. Why provide a soapbox for them? They don't deserve to even be on the same computer screen with something as spectacular as Lily! Don't get me wrong, I love a good debate but I never waste my time with people who just like to hear themselves talk:) Move along "Fuzzy".... Don't you have somewhere to occupy:)

Anonymous said...

Fuzzy, you think a child is not worth living if it can't breathe without assistance? Then what about my son and countless others like him? Should we just let them all die then because they need assistance breathing or coughing? My son was born with a neuromuscular disease which has left him almost paralyzed. He is trapped in a body that does not work with a perfectly working mind. The doctors gave us 3 years with him and he has survived for 15! He is a joy to us and to everyone who knows him. I raised him alone for the first 5 years of his life as a single mom. But, even when there are people who don't have the resources to care for a child with a disability...there are plenty out there who are willing to adopt! How can we measure a person's worth based on what they are able to do? Should we kill people who rely on medications as well? Where do we draw the line?

Heather Rubicam said...

What a beautiful child! You are so blessed. Thank you for sharing.