Friday, August 6, 2010

Genetic Testing Part II

When I started reading your comments in response to my genetic testing dilemma, I initially thought that I needed to go through with the test. There were so many compelling arguments about how I needed to honor my internal planning self and find out as much information as possible in order to prepare for whatever might be in store for us. I was especially compelled by Sharpiegirl's question: "If you have a student that is going to be in your class next year that is special needs, wouldn't you want some advanced notice so you could help that child be all it can be right from the beginning?" And then LauraC brought up the whole point about knowing early on that you're having twins, so that you can adjust your prenatal plan accordingly.

But then Eliza shared this story about a woman who learns that her child has down syndrome when she gives birth to her baby and holds her to her chest for the first time. Even though the woman had spent nine months bonding with her baby and was then holding the living, breathing little girl in her arms, she still had an overwhelming sense of rejection toward her daughter. It made me realize that I think my midwife is right. If I wouldn't consider abortion based on the results of the genetic testing, then I should just spend my pregnancy focusing on loving my child without any expectations about who s/he is.

Before I was pregnant, I was more open to the possibility of resorting to abortion if there was something "wrong" with the baby. But now that I'm pregnant, my feelings are changing. I don't feel like I can bear the responsibility of deciding who gets to live and who dies.

Don't get me wrong; I am still pro-choice. I don't think we as a society should ever force a woman to bring an unwanted child into the world. But when it comes to chromosomal abnormalities, special needs, and differences, I can't be the one to decide what kind of child is "worth" being carried and what kind should be aborted.

That's just me and where I am right now. I certainly honor the fact that each of us needs to process these issues for ourselves and figure out what makes sense to us. I just wanted to update you on what I'm thinking right now.

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Katie R. said...

I chose to do genetic testing during both of my pregnancies and I plan to do it again the next time I get pregnant. I am not sure what I would do if something was "wrong" with the baby but I, personally would like to know.

A friend of mine chose to not do the testing and I was shocked, I never thought of it as an option. She listed the same reason you did for not doing it. I then got to thinking about the children I already have. I hope nothing ever happens to them but they could have a traumatic brain injury tomorrow, start showing signs of autism or deveop some condition that would cause them to be incapacitated. There is no test to see if any of those things will happen and I am glad there is not as it may make me enjoy the moments I have with them now a little less. I would love my children the same even if they were somehow "altered". It just reminds me that there are no guarantees in birth or life so enjoy every second!

Vee said...

I just read Kelle Hampton's story the other day and it brought me to tears. Love her blog, too. FWIW, I think you're making the right choice for you.

Le said...

I think you gave Kelle and Nella's story the short shift....yes she was surprised at her daughters birth and yes she did react to her disability but there is much much more to the story. She continues to eloquently and lovingly share her story with all of her readers. Please revisit "Enjoying the Small Things" follow her pregnancy and Nella's growth up to today.

Erin said...

I chose to have the testing when I was pregnant with my first daughter, and for me it caused nothing but anxiety. The doctor left me a voicemail (yes, a voicemail!) saying they thought the baby might have something seriously wrong and I then had to have more test with specialists far from home. They couldn't find anything wrong at all but it felt like they were going to keep looking until something came up. My daughter was born completely healthy, and I couldn't be any more thankful for her, but I didn't have a minute to relax during the pregnancy.

When I was pregnant the second time, I decided just not to do it. I knew then that I wouldn't choose abortion (but like you feel that it is each woman's right to figure that out for herself), and that I was already in love with the baby. Everything turned out fine.

I didn't know any different the first time around, but I'm not sure I would have acted any differently had I known I could simply say no thanks to the testing. You just have to do what works for you.

Katie L said...

"I don't feel like I can bear the responsibility of deciding who gets to live and who dies."

Yikes! That doesn't sound very pro-choice to me.

Jessica said...

"I don't feel like I can bear the responsibility of deciding who gets to live and who dies."

Yikes! That doesn't sound very pro-choice to me.

On the contrary, I think she made it very clear that should would respect whatever decision other women make but finds herself in a place in her own life in which she feels the way she does.

Sara, I hope you continue to blog truthfully about your own life and how you see it because I've found that NOTHING you say about childbirth, pregnancy and raising children goes over well with everyone (as I'm sure you've already discovered). And I, for one, love reading about what you think, even if I don't agree with every bit of it.

Amy said...

Hi Sara - I don't want to pry, but I've been very concerned about you since your "possible miscarriage update" post. I'm hoping that this post about your pregnancy means it it was just a scare? I really hope things are ok.

Francine said...

When you first posted you were having problems, my heart broke for you. I have been there way too many times. And I also understand the feeling of being prochoice & feeling no matter the outcome I couldn't end a life I started. I did do the genetic testing, more so I might understand why things kept happening. And while they really told me nothing, I'm gald I had the tests- it gives my children- who are now adults themselves- information they may need. For me- its was never about me or the child I carried at that moment- it was about the future- these test gave me information my children will need to make an informed decision about how they approach having their own children. For example- my son was a twin,I somehow miscarried his sister while he remained healthy. There was no reason they could give us other than he was stronger, but it tells him so much- it could happen to his wife or he could get for the price of one. SO what I am saying is its good to be informed. And Bless both you will love your children regardless of what happens they are little lights that shine so brightly!More so just because they are yours!

Jessica said...

I am a pediatrician and more times than I'd like, I've had to be the person sitting with the family, sharing the news that the perfect baby they imagined may be a little different than planned. Every family grieves when they learn their baby is going to have challenges. They grieve the loss of the perfect baby they imagined, they grieve for the challenges their new one will face and they feel guilty for feeling this grief. In my experiences, the families with more time to adjust to these changes adjust better in those first few days after delivery. Maybe it is because they've had more time to adjust their new reality, maybe it is because they've had time to put plans in place to start caring for their new little one, maybe it is because they get to make the biggest of those adjustments in the quiet of their home with their partner. I'm not sure why for everyone, but I've had many mothers give me those reasons when we talk about how they're doing. Every one was grateful to know ahead of time. Prenatal testing is not just about abortion if there is a problem. In my experience, that's rare. The testing helps you prepare, both practically and emotionally, for some of the challenges ahead. In your case in particular, it could help you put in better safeguards for home delivery. Your choice is your own and I wish you the best.

MERgetsMRSed said...

"I don't feel like I can bear the responsibility of deciding who gets to live and who dies."

Yikes! That doesn't sound very pro-choice to me.

I've never seen a statement MORE pro-choice. It's about a personal decsio. Pro-choice does not equal pro-abortion.

Anonymous said...

As someone who just literally left my Ultrascreen. I would HIGHLY recommend it. My adviceis simply, take it for what it is. I would not have traded anything for the amount of information we learned at the ultrasound. If you truly do not care either way and would love the baby no matter what (that is our stance)...Then there is really no freaking out waiting for results! Honestly I could care less. But I got to see my baby!! I got to see the tiny system functioning. The little person was swallowing, the stomach was full as well as the bladder. We got to see the heart pumping and vessels flowing the blood. We could see the tiny arms, hands, legs, feet, and toes. Plus it made it so very very real because it looks like a baby.

As you can tell I am still on a high from the visit. I just thought I would let you know how mine went. I really feel that even if everything with the fluid and nose wasn't perfect...everything else that we got to witness moved my bond with this child forward leaps and bounds!

Lisa said...

Sara, I feel the same way for exactly the reasons you've articulated. And I've never even been pregnant, I just know that once I get to that point I am unlikely to want to terminate.

I'm also concerned about you and Matt after the miscarriage scare, and wanted to let you know you're in my thoughts.

Eliza said...

Hi there, Eliza again. Glad you found that story useful. I will also say that I read a short interview with Kelle (don't have the link, but you can probably find it through google). In contrast to what Jessica shared above, Kelle found that . She grieved hard for a few days (and still have challenging moments and days, of course) but was glad that she didn't find out in advance because she wouldn't have terminated the pregnancy anyway. She felt that it was easier to move through the grieving process and fall in love with Nelle because she was holding a sweet, adorable, live being in her arms. Ultimately, I think the decision to get genetic testing (or to terminate) is very personal. Arguments on both sides make sense to me.

Also echoing another commenter above to say that pro-choice does not mean pro-abortion. I am very much pro-choice, but at this point in my life I would probably not have an abortion for any other reason except rape leading to pregnancy.

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