There But For the Grace of God...

I have to get something off my chest. It may start a wee firestorm, but I can't not say anything. I feel so strongly about it that I've just used a double negative.

I cannot stand it when a pregnant woman states that she won't get screening done for particular diseases because, "No matter what, we wouldn't terminate anyway."

First of all, I'm not saying that the option to screen or test shouldn't be 100% the prerogative of the mother and father - it is. I'm also not saying that everyone should choose to test if they're a responsible parent. Some tests are dangerous and scary at best, and others provide sketchy information that could potentially scare the bejeezus out of expecting parents. Those are all fantastic reasons to choose not to opt for a screening.

But please, for the love of God, stop saying that you won't test because you wouldn't ever choose to terminate. YOU CANNOT POSSIBLY KNOW. PERIOD. You have absolutely no freaking clue what you would do if you were told your unborn child had a particular disease until faced with that information. I don't care how firm you think your stand on the issue is, you cannot know.

Secondly, there are many other reasons to have testing done that don't include deciding whether or not to continue the pregnancy. Preparedness is a big one - avoiding the sheer horror of a labor and delivery room announcement of "Uh... wait a minute. Something's not quite right," would be worth it to many people. Preparing loved ones for your baby's special needs. Lining up specialists for the birth and any treatment that might be needed after. The list of things that could be gained by knowing these things in advanced is too long to enumerate here.

Finally, the reason I hate this statement most is this:

By making that statement you are implicitly judging those of us who have made that decision. And it hurts.

None of us who have gone through having to choose to terminate a pregnancy so late in the game would wish that horror on anyone else. But we would appreciate enough empathy to at least phrase your decision in a way that doesn't imply we were amoral parents for ever even having testing done - let alone acting on the knowledge it revealed.

I have beautiful, loving, caring friends who had to terminate for disease that people swear up and down they "could never" terminate for. Down's, spina bifida, muscular dystrophy. And do you know why? Because you rarely see the true faces of any of these diseases. The average Down's child is not Corky from "Life Goes On". The more painful end of the spectrum includes some truly horrifying suffering for the child, and these women made a decision that was perhaps more difficult than mine because they face the judgment and scrutiny of unthinking people every day of their lives. They're desire to save their child was no less than mine, and the pain they live with is no less. It is this sisterhood of women that leaps into my mind when someone makes that comment to me: "We would never terminate."

So when you call to tell me you aren't having testing done, please really think about your reasons before you blurt them out. And if you give me the wrong answer, don't be surprised when I get my hackles up.

Comments

[evelin]

{{{{hugs}}}}
We tested. We didn't _plan_ to terminate if something was dreadfully wrong ... but the possibility was certainly there. But I was praying that I wouldn't have to make such a painful decision. I absolutely applaud your decision to do the right thing for you and your baby ... I can't imagine having to make that choice.

[Donna]

Oh Julia - I so agree with you.

My personal opinion is this: When women say they would never terminate a pregnancy, I just want to scream, "It's not about you, it's about your baby!" Sometimes we need to go past what we're comfortable with and what seems "right", and seriously consider what is best for the child.

[MelanieC]

In my experience as a NICU nurse, I have too often seen parents say this, simply out of fear. They were too afraid to face that decision, so they simply didn't. And later, when their baby is dying in my nursery, they have so many "what if's". It was the child who suffered.

I think that better education on the issue is the key. With information, ignorance can be erased. Too often, testing is only associated with termination, not with gathering information about your unborn child.

You know how I feel about your situation and others. Thank you for being a brave and loving mother to Thomas.

[Lisa]

Julia--Phenomenal post.

The only positive thing I've learned from IF is that I can't say with any certainty what I would never do (e.g. I never imagined I would sign on for injectable drugs), and if I don't have perfect insight into myself--the person I presumably know best--than what right do I have to ever make presumptions about someone else?

[getupgrrl]

Great post, Julia. As always.

[Kristine]

First of all, can I just ask...were you a fly on the wall of my office yesterday when I was having just such a conversation with my co-workers?
I'm new to this line of thinking, having recently been educated about the intricacies of the whole abortion issue. Funny how quickly I've moved away from how black & white some people try to make this issue. It's so not.
So we started with abortion, and I tried gently (these are my coworkers after all) to make them understand how there could be cases of which they've never considered where just such a heartbreaking decision must be made. Then the conversation turned to the testing. Okay, I've always said I would take the child God gave me- physical/mental condition not withstanding. But until recently I never considered the possibility you faced. And I agree with the previous poster...making statements such as "I WOULD NEVER" is very dangerous. And foolish.
So IF I'm ever in a situation such as you found yourself in Julia, I will only say I would hope to weather through it with the grace that you have. You are a gem and I'm so glad I know you! And I do feel that I know you, and understand where you are coming from on these crucial issues. This despite the fact that I was having some question marks pop into my head when stating that "I know someone who went through this." I do know someone...it just happens to be someone I haven't met in person.

[Danae]

I am absolutely appalled to know that anyone would call you to make the holier than thou statement: "we would never terminate."

Appalled.

I truly hope that these blissfully ignorant women/couples are never faced with the horror of having to further contemplate this statement.

I'm so sorry.

[Julie]

Lisa said: "The only positive thing I've learned from IF is that I can't say with any certainty what I would never do."

Right on. I'll take it a step further I think there are things I would never do. I just won't know what they are until I'm slammed up against them. As my options diminish, I grow more and more flexible, but I know that somewhere out there, there's a rubbly brick wall with my name on it.

Julia, my favorite point you make above is the one about preparedness. Even if you're sure you wouldn't terminate, why would you choose ignorance over knowledge? We have access to miraculous technology, and it's hard for me to understand why someone would choose not to use it when it could make for a better life for a child who might be born ill or disabled.

Can anyone educate me?

[shelley]

Julia -

Your post is right on target, and I want to second Julie's post about knowledge being power.

With my son, the perinatologist made it perfectly (nay, callously) clear that I was only providing life support for my son. There was NO WAY he would live outside of my body, and in fact his conditions worsened every day. He was being crushed in a womb with no amniotic fluid, had one missing kidney and one that was non functioning, and a heart that needed a transplant or multiple surgeries shortly after birth. Notwithstanding the simple fact that his lungs would have never developed and he would have suffocated within 2 minutes of birth.

Tell me, did I have a choice in that decision? How could I selfishly choose to carry him to term, while he's in pain EVERY DAY, knowing his death would be suffocation?

But without testing, I would have never known there was a problem. And with testing, had we found even a single functioning section of his one kidney, *anything* that would have given him a chance at working with that little heart he DID have, we would have developed the best prenatal and birth plan we could have, including saline infusions in utero, C-section, and making damn sure I delivered at a level 3 NICU hospital.

I have to hand it to you, Julia. You nailed this one on the head. I just hope the women who are sleepwalking in ignorant bliss when they make that statement never have to face the reality we did. Because you never know what you will or won't do until you're facing it.

Shelley

[Moxie]

We didn't test. I won't test with any future pregnancies I'll be lucky to have.

The reason we (really I, since my husband didn't really offer an opinion) didn't test is that I saw testing as a red herring. If you get an "all clear" on the test, it means your baby is "perfect." Especially here in New York City, where perfect is almost good enough. But there are only so many things that can be tested for, and there are so many other things that can happen. There are two children in my family with quite serious mental delays, and neither of them are things that are routinely tested for. So for me it felt like a negative test would just be false assurance that I was goingt o have this perfect, mytical child. Not knowing kept me closer in touch with the fact that this was a person with weaknesses and flaws that we would only discover once he or she was on the outside.

Maybe that's selfish, because if there was something wrong that would have my child in pain, I don't know what I'd do. After that first awful awful doctor told me (based on almost nothing) that my baby was going to have Trisomy-18, I got a second opinion that showed no reason to think that. I realized then that testing would only make me more scared about things, and that there was no way to know for sure that everything would be fine. Not even when the baby came out (my cousin's problem didn't manifest itself until she was 2 years old). So all I could take it on was faith.

Maybe it was fear that I'd have to make a decision? Or maybe fear that everything would look fine and then wouldn't be later on. I just needed to allow myself to live with uncertainty and become comfortable with it so that I woudn't take anything for granted.

I don't know if any of this makes sense, but I thought I should explain why I didn't test. It's not quite as simple for me as "I'm not testing because I don't want to have to make a decision."

[michelle]

I've been debating in my mind what to say here, and I hope it comes across the way I want it to. If I am ever lucky enough to get pregnant again, I will be 35, and therefore an amnio is usually routine. I don't plan on getting one, because of the increased risk of miscarriage from this test. I would get all the tests that don't entail risks to the baby - ultrasounds, blood tests. But yes, I am choosing not to take advantage of all the technology. I am not one of those women who claims they would "never" terminate. I know I would in certain situations but not in others - my husband and I discussed the possibilities when I was pregnant with my daughter. I'll take the chance, though, that some condition is missed rather than take even the small chance that a miscarriage is caused by a choice I made.

Julia, I do agree that there is a certain judgmentalism in women who say they would never terminate to you. It's kind of like one of my pet peeves, the women on TV who chose to carry a rapist's baby and are lauded as "brave" and "courageous" as if those who chose to termninate in this circumstance are not. But, I do know many women who truly would NEVER terminate a pregnancy. They are very Catholic and that is just what they believe. I've had this conversation with them - they claim not to judge others. I know of a woman (sister of a friend) who found out in her seventh month that her baby had no brain. She carried him to term - for her this was the only decision she could make due to her beliefs. It may not have been the decision I made, but I respect it, just as I respect your decision.

[Michele]

Praise be, Julia. Praise be! And Amen. Kick ass post, by the way.

[Andreah]

I took the AFP blood test at 18 weeks and for the 4 days that followed I was worried as ever. I didn't want to have anything wrong with my baby, and I for sure didnt want to have to make any big decisions based on the outcome. Because of this I almost didn't even take the test because there were too many "What ifs." I am often in denial when it comes to believing that there are possibilities that something could be wrong. If I don't know about it, it's not there mentality.

After talking with my doctor well actually more from just learning from you Julia, that I had better be prepared than not. I would have to be brave and take the chance of finding out bad news. It was something I had to start doing when I got pg. I had to start making decisions not just for myself but for this baby inside me.

The test was fine, as was the u/s, but that's still not a reassurance in my opinion. I do feel more secure in knowing that I at least I did test.

[Julia]

Particularly in light of Moxie and Michelle's comments, I thought I should provide some more information:

I sent this in an e-mail to a fellow blogger today, and it likely bears repeating here:
"My position on testing is rather up in the air: There are certain tests I’ll do without batting an eyelash, like the quad screen and nuchal fold test – because they’re not invasive or dangerous. But I don’t plan on pursuing CVS or an amnio unless other tests or ultrasounds show something is amiss. For us, chromosomal problems have never been an issue. Of our three pregnancies, two were tested and both had perfectly normal chromosomes (one was Thomas). But I’m all too aware that each pregnancy is a new game of Russian Roulette and I want to be as prepared as I can. We’re already geared up for monitoring out the yin-yang because Thomas’s disease can only be discerned by ultrasound once the baby has developed enough to manifest the symptoms.

My biggest “owie” and issue with the concept of testing isn’t even whether or not to do it, but rather saying you won’t because of some pre-supposed moral high ground. To me, it just seems like choosing ignorance – and that’s not a good parenting skill."

What I hope to clarify is that I agree with everything everyone has posted. Every test is different, and every choice is different. I just wish people would quit telling me their reasoning is as simple as "We would never terminate."

Thank you everyone for you fantastically thoughtful and eloquent comments!

[Wynne]

It's like you were reading my mind. I just hit send on a message to my sister-in-law telling her congratulations on getting good results on her quad test. I have about three weeks until I take the test and I just told her I'm not sure I can do it.

I haven't posted in a long time so you may not remember my case - I ended my first pregnancy when cystic hygroma with fetal hydrops was found on an ultrasound at fifteen weeks. I never know whether to consider it a termination or miscarriage because I chose to end the pregnancy that day but there was zero chance the baby would survive. The ultimate diagnosis was Turner's Syndrome but there were many translocations. Both my husband and I have had several tests and all the results indicate that it happened at conception and we're not at a higher risk of it happening again. BUT, as I quickly move towards the fifteen week point, the fear of losing this pregnancy is overwhelming.

I should also mention that there are about 5 people I know in my "real world" who are pregnant within a month of me, most significantly are my sister-in-law and my next-door neighbor. This is my neighbor's first pregnancy and she is chosing not to do the tests because of the reasoning descibed above, "we wouldn't terminate anyway." After talking with her I knew that I could make that decision but I'm terrified of having to make it again and I'm terrified of a false positive.

Reading your blog and those of other courageous women definitely give me strength and provide a support I haven't found anywhere else. I know I will most likely take the test but it will take strength I have to tell myself every day that I have.

[Cecily]

Wow. What an amazing and insightful post, and what amazind and insightful responses. I'm blown away.

I know I would test as much as the doctor recommends. Period. And yeah, depending on the results, I might choose to terminate. Thanks for making me feel capable of making that decision should the need arise.

[Mollie]

Excellent post, dear lady.

I did the "Jewish Panel" (made me think of a bunch of rabbis all sitting around a conference table with me at the head, them saying things like, "so, are you sure you're ready for another child?") the quad screen and U/S for this pregnancy, but not CVS or amnio. I am 35, and have miscarried once, at 11 weeks.

I wanted to know all I could know about this child inside of me, without being invasive or risking miscarriage. I talked with the docs involved to make sure I was doing things in a logical way. One of the strangest moments, though, was sitting with the OB in the exam room at around 16 weeks and being told, "well, your U/S will be scheduled at around 20 weeks, but should you decide to terminate, you'll have to decide quickly, because after 20 weeks it isn't legal to terminate in Minnesota."

The idea of having to cross state lines, go on the lam, if termination was necessary for us, made me unutterably sad. I figured the chances it would actually happen to us were slim, but I know it has happened and will happen to others. Talk about adding insult to injury, and making people feel like criminals. My blood boils just typing this.

I know full well that even though the quad screen was fine, and the U/S showed us a gorgeous, healthy girl fetus, it's not the whole story. When we adopted our son, they sent us two photos of him taken at around 2 months. They were clear enough, but he was clothed. The agency required us to "sign off" on him based on these photos, and only after consulting a physician. I was a bit offended by this, since we had specified "healthy infant" and I trusted his Vietnamese caregivers and doctors to assess that. But it was required. I'll never forget that phone conversation, reading the tea leaves with this doctor, her saying, "well, we look for the placement of the ears on the skull, and that looks fine, the cleave above his lip looks fine, he doesn't have any of the markers for x, y, z...." I thought, what could she say to me to make me refuse this baby for whom we have waited so long? He survived his birth, and seems to be thriving. The whole thing just made me sad, but I guess it made sense to be informed, to the extent that you can be informed, looking at a couple of scanned photos from halfway around the world. I didn't take it as a guarantee that nothing would ever go wrong with his health, or be discovered later. Testing isn't about guarantees, and neither was assessing the photos of our little boy.

Lately, I've had people kind of assail me for finding out the baby's gender. They say it shouldn't be legal to find that out, since so many babies are terminated because they aren't male. I just laughed. But it's exasperating.

I am all for testing, and very sympathetic to the fears it evokes. But I am not sympathetic to anyone who would trumpet ignorance as a moral high ground. I notice that these are often the people who shoot down sex ed in schools as well. Ignorance is not bliss. It's just... ignorance.

[Liz O]

Excellent post as usual. We have good friends who learned through testing that they were having a baby with Down's Syndrome. They were able to have several months prior to birth to begin to begin the process of emotionally dealing with this syndrome as well as setting up early interventions and a birth where their child could immediately be monitored for some of the potential health consequences. Stories like theirs, and yours, underline all that can be gained from testing, regardless of what you "think" you might do in a particular situation. Knowledge is power.

[Melissa]

Guiltily raising my hand

I did say that, during two pregnancies. Then I did terminate a third pregnancy. I wish I could go back in time and slap the self assured look off my face.

I'm sorry I ever said that.

[Moxie]

Mollie, people have actually criticized you for findoing out the gender of your baby? Uneffingbelievable. They are aware that in some cultures girl babies are killed at birth and declared stillbirths, so outlawing finding out the gnder ahead of time is useless? And that maybe the solution has to do more with economics and social change than with technology? What is wrong with people?

[Leslie]

Like Andreah, I also took the AFP test at about 18-20 weeks with my third pregnancy. I was also worried sick waiting for the results. Only back then, (1992) the results took three weeks!! The results came back abnormal. There was a possibility that something was wrong with my child! We took my OB's advice and went for an amnio and genetic counseling. The amnio went ok, but the geneticist we talked to was singularly unpleasant. The amnio came back fine. No Down's Syndrome, no genetic abnormalities. But, if the amnio HAD shown something seriously wrong, we would have terminated. The pain of having to terminate a pregnancy, would pale in comparison to the pain of having to raise a disabled child.(for me, anyway) While I would never, ever pass judgement on someone else to do what is best for them in their circumstances, women need to be careful. Tests are not always right. The AFP test that came back abnormal in the summer of '92 was total bullshit!! Our son was born strong, healthy and perfect on New Year's Day, 1993. And like Mollie, I had people tell me that it shouldn't be legal to find out the gender of the baby before birth for the same reasons that she stated. People were terminating if it wasn't a boy. At the time (1987-88)I figured it was because ultrasounds for that sort of thing were fairly new. But I see the same attitudes today.I did ask to know the sex of the baby back then. They said it was a girl. Our daughter is now 16. Just be careful, be informed and do what is best for you and your family. It's no one else's business!

[Lori]

Since I'm 40 and only 4 months from turning 41, my risk for having a Down's baby is getting higher by the minute. My husband and my opinion was that we'd terminate a Down's baby. And this was even after my younger sister had a Down's baby (her 3rd of 5 kids). But now I don't know what we would do if after 6 1/2 years of IF and 3 miscarriages and too many months of injecting drugs into my ass I finally get pregnant only to be told that our baby has Down's or some other disease or condition which he or she might survive but not without pain or lack of mental or physical function for perhaps a short life. You are absolutely right in saying that you don't know what you'd do if faced with the dilema of whether to terminate or not - no matter what the diagnosis. I pray that I never have to make that decision. I pray for that more than I pray that I get pregnant.

[gretchen]

When I finaly became pregnant after 2 years of attempts, I started thinking a lot about what tests that we should have performed. I've had this fear that the reason that it was so hard for us to conceive in the first place was because I didn't have very many good quality eggs. How else could you explain the 11 mature follicles in November and still no pregnancy? After some thought, I (like Cecily) decided that maybe my doctor should have the most influence on that decision. After all, she's studied this a little bit more than I have! I planned to ask her A BUNCH of questions when I had my first exam by her at 10 weeks. My 8-week sono looked good, and I was only 30, so I didn't think that she would recommend too much testing, anyway. It turns out that we lost the baby sometime between that sono and 10 weeks (I started bleeding the day of my initial OB appt.), and so we didn't have a decision to make after all. We chose not to have any chromosonal testing done, but I'm pretty sure that the m/c was caused by something along these lines. I'm still convinced that something is off with my eggs, and that I'll be able to complete a healthy pregnancy whenever the perfect follicle decides to finally rupture. The ONLY silver lining that I have found in this miscarriage is this: I am INCREDIBLY thankful that it happened when it did, and that we were saved from making that decision ourselves. I can't imagine going in for a routine 20-week sono and discovering that something is horribly wrong. That doesn't mean that I won't test next time, I just consider myself lucky that Nature took it's course when it did.

[gretchen]

Oh yeah,

And if one more person says, "At least now you know that you CAN get pregnant", I'm going to kick them.

I never knew how many stupid people there were in the world before I started trying to get pregnant.

Sigh...

[Karen]

Wow.

Just wow. Post, responses, amazing women, all of you. Wow.