Friday, January 9, 2009

The Future of Prenatal Testing

Where are we going with prenatal testing?

Once again, a fellow blogger has posted a subject that I think about, talk about and write about all the time with people. Please see this post for a most amazing look at the topic of prenatal testing- question of life or death. Malakai's mom takes the words right out of my mouth. I was in tears after reading it.

Just the other day I got an email from a friend who wanted to know more about the startling statistic that I've written about in the past....that 90-91% of pregnancies are terminated when a diagnosis of DS is given after an amnio. This friend of mine asked if the statistic is slightly skewed by the fact that most people who get an amnio are more likely to terminate anyway, hence the reason they are having the amnio. It's a good question and makes some sense but it's still horrifying. I believe this is one of the biggest areas of discrimination still remaining in our society. Life or death decisions are being made based upon a diagnosis that is hugely misunderstood. Please look at my Joaquin. He is the child being aborted.

I also have friends that have brought up the fact that maybe not every parent is equipped to handle a diagnosis of DS therefore it is in the best interests of the child that he be aborted rather than have parents that are afraid or incapable or just plain don't want a child with a disability. I really don't know what to say to that. Like Malakai's mom mentions in her post, what if your child is born "perfect" but suffers a trauma at birth that leads to brain damage? What if your child is hit by a car and will never walk or talk or is now mentally disabled? Are these parents that would have otherwise terminated a child with DS going to fail as parents now? Probably not. I would hope they would rise to the occasion and do what was needed for their hurt child because it is their child. Right?

What if they develop a prenatal screen that tests for autism? for depression? for ADHD? for bipolar disorder? for leukemia? for diabetes? for obesity? for breast cancer? the list can go on and on. Would it be ok to abort based on this information? Where are we going as a society with this kind of testing? I cringe to think of where we are headed.

I am passionate about this topic. I feel moved in ways I cannot explain to reach out to the world and make a change. I don't know how I will do this but I know that I have to. Joaquin is the most amazing child and has every right to be here. Please tell me, what human being is perfect? who would want to live in that world anyway.

My sister in law, Jennifer, just emailed me this creed and I think it explains it all....

THE DIVERSITY CREED
By Gene Griessman © 1993

I believe that diversity is a part of the natural order of things—as natural as the trillion shapes and shades of the flowers of spring or the leaves of autumn. I believe that diversity brings new solutions to an ever-changing environment, and that sameness is not only uninteresting but limiting.

To deny diversity is to deny life—with all its richness and manifold opportunities. Thus, I affirm my citizenship in a world of diversity, and with it the responsibility to….

Be tolerant. Live and let live. Understand that those who cause no harm should not be feared, ridiculed, or harmed—even if they are different.
Look for the best in others.
Be just in my dealings with poor and rich, weak and strong, and whenever possible to defend the young, the old, the frail, the defenseless.
Avoid needless conflicts and diversions, but be always willing to change for the better that which can be changed.
Seek knowledge in order to know what can be changed, as well as what cannot be changed.
Forge alliances with others who love liberty and justice.
Be kind, remembering how fragile the human spirit is.
Live the examined life, subjecting my motives and actions to the scrutiny of mind and heart so to rise above prejudice and hatred.
Care. Be generous in thought, word, and purse.

10 comments:

sheree said...

I am SO with you on this topic. It is frightening to think that one day, these precious people may no longer exist. I cringe thinking about it.

I would like to take this moment to be EXTREMELY honest and real...

With my first son, I had all of the prenatal testing done. Easy peasy. With my daughter, something in my gut told me "don't do it...you don't need to." So I went with that.

Looking back, I am fairly certain that had I done the testing and been faced with that diagnosis prenatally, I would have been easily persuaded to terminate. And the afterwards, I would have always hated myself, but I *think* I would have done it.

It is honestly SO sickening for me to even think about not having my Gabby. I am forever grateful that I went with my instincts. She has changed myself and my husband so much but look what it took to open our eyes.

This is what I have to remember when I think of that 90%. That *could* have been me. This is why I feel I have a STRONG calling to advocate for her and others.

Anonymous said...

My nephew was sent for testing by the schoolboard at 5 because they
felt he was behind other children.
The children's hospital diagnosed
him as developmentally delayed.
He is now 15 and goes to a private
school where he works at his own pace. You are right why is his
disability different than one diagnosed prenatally? They are all
our children and you never know what will happen.
I used the institutes teaching
with my sons when they were little. Do you teach your older
sons words with their methods?
Lucie from Canada

Loren Stow said...

A really thought-provoking post! I agree that science is opening up very scary avenues for our generation and generations to come. When will it ever be ok to diagnose any and all 'disabilities' and then decide that there should be a 'medical abortion' to solve the 'problem'? I see it everywhere, from our children, to our food, to our homes and our lives - Plastic Perfect is not only accepted but aspired to! As everyone continues to reject that which is natural, good, innocent and 'imperfect' they continue to create a world that celebrates 'sameness' instead of 'uniqueness'. Having said that, I hope that through moms like us, moms that are raising and loving their children with disabilities, the world will begin to learn more about our children, begin to accept them, and see them as worthy of their attention, respect and love. I think we have this oportunity with every person we meet and speak to - and that is an honour, to speak for my child, to speak for all children who deserve love and respect.
SORRY - a bit of a long winded comment ;)

Hector and Jennifer Varanini Sanchez said...

Sheree- Thank you for your comment and your honesty. Maybe the key is to try and think of "why" you would have been persuaded to terminate and then use that information to understand what might need to be done during the time that a diagnosis is made prenatally so that we can help women in the same circumstances make the most informed decisions. Was it a fear of the unknown? outside infuences? It would be so good to really contemplate what those persuasions might have been.

Lucie- We have done bits of the Institutes program with our older sons but nothing very formal. We are excited though because as we teach Joaquin, I will be involving Diego and Mateo in the reading and math and intelligence bits as well. It will be helpful for the whole family.

Loren- So great to hear from you! Yes, science is getting a bit scary. Of course, there are some amazing things that science has allowed- I think of the surgeries that can be performed in utero. So I definitely understand that advances in science are a great and amazing thing but I do think some of the advances and tests and procedures get into tricky territory. So many ethical and moral issues.

Meg said...

Loved your post (and your friend's post). Pregnancy is not a promise of the outcome and I hope many people faced with the choice will read your blog and realize what they would be missing. Perfection is a myth not worth striving for. We love you Joaquin!

Jennifer said...

A great post and stunning photos. He is such a handsome boy!

Lisa said...

Jennifer, what an eloquent post. This is a topic that is very close to my heart as well. I've blogged about this. Although I did undergo routine prenatal screenings (but not amnio) with my other pregnancies, I declined all screenings with my last pregnancy, and lo and behold, I gave birth to a baby with Ds. I am glad I didn't know beforehand. Knowing what I know now, I'm not sure I understand the point of all the prenatal screenings that are available, and those that are being developed and refined. To give parents more choices, I suppose. As someone who has always considered herself to be pro-choice, I am horrified by the termination rate among prenatally diagnosed cases of Ds. We as a society seem to have lost our sense of responsibility. With choice comes responsibility, and I'd like to see people making better choices.

Thank you for this post.

On a lighter note, thanks for you comment on my post about my favorite "M" things. I'll give you the letter G :)

Barb said...

The more people that are willing to share their story and experience and joy and pictures and children, the more people will question this frightening fact. I applaud you all on not tiptoeing around that all-important fact everyone should consider.

Sheree, you are totally right about the persuasion factor. I think there should be some kind of sensitivity training for genetics counselors...looking back, I had to do all the research myself to realize if my baby ended up with a DS diagnosis, it wasn't the end of the world: in fact, would have been a blessing. What would be so wrong with scared parents talking to parents who've been there, or watching a video about the realities and positive facts of DS...including the joys? We were met with such a gloom-and-doom scenario, persuasion to terminate wouldn't be that hard for most.

My story about prenatal testing for Down syndrome:
http://www.bluetoad.com/publication/?i=5630&p=7

Oh and a GREAT movie to watch that touches on the topic of genetics and perfection is Gattica with Ethan Hawke and Uma Thurman. If you haven't seen it, definitely worth renting.

Jen...big hug! Everyone...your babies are beautiful! :)

sheree said...

Barb- I totally agree...sensitivity training should be mandatory.

And since you brought up genetic coundelors, just thought I would mention that I start back at school next week and THAT will be the direction I am going. I am thrilled that one day I will be able to sit in a room with new parents and tell them how wonderful life can be, even with such a diagnosis ;)

Lisa McGowan (broadzilla@clearwire.net), Medford, OR said...

I happened upon your blog and wanted to comment on this post. I have a daughter who is 9, she has Down Syndrome...I was told within 10 minutes of her being born that they wanted to test her heart and blood because she had several of the markers. I didn't even flinch, knowing that God had sent me a special present that day. Jenny is adorable...stubborn and headstrong, but brilliant and perfect in my eyes. I also have two boys, 18 and 10 who both have Asperger's Syndrome and Bipolar Disorder. Jenny, by far, has been an easier child to raise. I would NEVER want to see more testing that would tell anyone that their child has any chance of struggles in their lifetime...it would be disastrous. Too many people don't understand the joy that all my children bring. It's not easy, as I am raising them alone. They struggle daily, but they also succeed daily...I praise God that he entrusted me with them! I only hope that I can help the world to see what I see in them, and that I give them the best lives they can possibly have. God Bless you and your family...they are beautiful as are you!