Wednesday, October 7, 2009

Prenatal Testing

Disclaimer:
This is our story, and our decisions. I am NOT suggesting or implying that any other decision about prenatal testing is wrong. Prenatal genetic testing is a very sensitive decision that can only be made by the parents that are faced with that decision. After much prayer and clear direction from our Lord, this is what was right for our family.

Chad and I opted in favor of prenatal testing. Johanna does not have "soft markers" for Trisomy 18, she has an actual diagnosis. A diagnosis that is not likely to be wrong, especially with the heart defects and physical defects that she also has. Genetic testing is very specific, and is highly accurate. I have felt the need to share our decisions and the reasoning behind it for some time. I'm just trying to do it in a way that is thoughtful and appropriate.

When I was pregnant with Clayton I declined all screening prenatal testing. And, now with our history I most likely will in the future, simply because it can be(not always, but sometimes) unreliable and misleading. With our history of T18, we will be given the opportunity to advance directly to testing and to skip the screening. An option we will definitely take.

Before I was thrust in the strangest "what if" situation of my life, I always thought I wouldn't have an amniocentesis or CVS(I had this one by the way), because I said the results didn't matter. I would never terminate a pregnancy under any circumstance, so what difference could the test results make? After living through this "what if" situation, I can say for me they have made all of the difference in the world.

The positive T18 results didn't change my mind about continuing a pregnancy with an adverse diagnosis, they helped me to be more prepared for the challenges that it would(and still do) bring. I was able to arm myself with knowledge. I was able to learn anything and everything about genetics, heart conditions, life expectancies, and blah, blah, blah. That's how I deal with any problem. I dive head long into the middle of it, and learn absolutely everything that I can. Google is my BFF.

The adverse results of the CVS also helped me to enjoy this pregnancy. Every day has not been easy, and in fact, very few days have been what I would consider easy. I have to explain more, and comfort others more than I could have ever imagined. But, that's OK. It's been therapy for me. I knew very early in this pregnancy that I wouldn't have my daughter with me long, if at all, after her birth. The only mothering/parenting experience I would have with her would be during her gestation period. Knowing this, and not just guessing it, helped me to anticipate each new pregnancy stage, and not simply endure them.

If you've read or followed long at all, then you know I am obviously and staunchly pro-life. I make no apologies about believing this way. I believe that life begins at conception(not birth), and that only God is the giver and taker of life. But, I am also a believer in utilizing the resources that are available to you to your advantage. I believe that God gives us knowledge and science and wants us to use these things to glorify Him. Chad and I have been able to use this pregnancy to connect with others in a way that we would have never dreamed possible. In my opinion, had we not known a definite diagnosis for Johanna, we wouldn't have been able to connect with others in the way that God has allowed us to do.

That's why I chose definitive prenatal testing. I wanted and needed a definite answer about our daughter. I needed to know what we were facing. Did the testing change the outcome of the pregnancy? Absolutely not. Did it change my attitude about the pregnancy. Of course, but not for the negative which would be the assumed. After the initial shock and dismay began to diminish, I have been able to enjoy most of Jo's pregnancy. I'm ready to be finished now, but I am 36 weeks along. I would dare say ask any woman who's been 10 months(yes 40 weeks divided by 4 weeks in a month equals 10 months, not 9)pregnant if she was ready to be finished by this point, and she would most likely agree with me.

We, along with our family and friends, have been able to prepare ourselves for the next chapter in our lives. The chapter where Johanna is not with us, but is with her Lord.

10 comments:

Allison said...

Im definately in the same boat as you about this. I am an info guru and like to have the option to know as much as I can about a situation or circumstance. I am so glad that the testing has allowed you to enjoy your pregnancy and use Jo to reach others in a way you maybe wouldnt have if you had not known the diagnosis. I seriously cant wait to see that beautiful little girl! She is leaving her print on this world before she is even born and it will be such a joyful day to see her little face :)

Adrienne said...

Well said my friend! Although we've got another Trisomy, I'm so glad we knew and were not surprised. You have been so strong through out this pregnancy and I know you've touched so many people. Thank you for sharing your story as well as Jo's.

Emma and Company said...

A great post :)

Pam said...

Nikki,
I work in OB every day. That was so very well put and so clear!!!!! I have been following for a long time and you are strong and consistant and most of all you are His child. Johanna is His to and how precious He gave her to you and Chad. I'm praying for you always. If you need ANYTHING!!!!!!
aLL MY LOVE AND PRAYERS!!!!!
Doula Mama Pam

Kelly said...

Amen! This is such a great post. I am so thankful that you shared your point of view! I'm praying for you everyday!!

Rebecca said...

Thanks for sharing your position. I completely get what you're saying. I am 'staunchly pro-life' as you put it as well and I think my personal experience only has served to further solidify this position. I've come to realize that being pro-life encompasses so much more than being just anti-abortion, dontcha think?

Perhaps you will share many days with Jo, Nikki. Don't discount that. We can never tell what He has in store for us.

Abby said...

thank you. i've never understood the point of the testing because i would never terminate just because the baby's not perfect. but your point about the knowledge, and about savoring the time you do have, really made me understand. and i am praying for you and your family daily.

kirstenpetree said...

wonderful post!

Ellen said...

That is beautiful. I am older than you; not having more beautiful babies, but I treasure your blog an accounting of it. I never doubted the choices of our Lordl

mabel said...

I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Lucy

http://maternitymotherhood.net