Testing for Down's Syndrome

It is early days yet, but there now exist a number of companies that can use a pregnant woman's blood to detect DNA from the fetus. For certain conditions, then, this means no more amniocentesis - which requires sticking a large needle into the actual amniotic fluid (anything that is being stuck into my stomach, by definition, is too big) and carries a slight (read: unacceptable if you're worried about the pregnancy in any way and there is another way to go) risk of miscarriage.

We chose to use a test like this, which would tell us a limited number of things about the baby in my womb. Specifically, it looked for trisomies, triple chromosomes, four of which can lead to viable babies. First, chromosome 21, in triplicate, means Down's Syndrome. Next, there are two less likely, more extreme trisomies, 13, and 18, in which many major organs are severely affected, and many babies don't live past a year or two. Finally, there are sex chromosome trisomies, that may or may not affect fertility, and since they test X's and Y's, you also find out the sex of the baby from this test.

First of all, we didn't really care about the X's and Y's - in any way that would affect our birth preparation. Next, if the baby had Down's Syndrome, we wanted to know now, to help us prepare (and yes, mourn now, the ideal of a baby without), instead of being caught by surprise at the birth. I wanted to be able to smile a full on smile at the birth. Then, trisomies 13 and 18. This one was harder.

The reason we chose the test in the first place is because of my "advanced maternal age" - I'm a grand dame of pregnant ladies now, and that puts me at a higher risk of a baby with any of these trisomies. And to be honest, I just didn't know what I would do if we found out a positive on 13 or 18. A baby whose organs are failing. I would have had to spend a lot of time in books and talking to doctors and on websites to figure out what to do. Yes, I am talking about abortion. But do not make the mistake to think I'm talking about it in any way lightly.

Ever since the first ultrasound with baby A, almost 5 years ago, I've realized that what was growing inside of me was its own being. I had no right to terminate that life. I don't speak for other pregnant women, just myself. I could tell that that was how I felt.

But a baby with so many health problems, severe ones, that could cause death soon after birth? This presents me with another issue.  I don't believe in a god that is directly working in my life, and I also think that nature is dispassionate. Evolution does not save human beings from pain and suffering. There is no "god will do what's best" excuse for an agnostic. And as a parent, even of an embryo, I think it is partly my responsibility (a huge one at that) to think about my own children's suffering. I don't get to pass on the guilt, worry, any of it to a god who knows all. If I'm grown up enough to have a child, I'd damn well better be grown up enough to tackle the most difficult questions that life has to throw at me.

I didn't have to make those tough decisions in the end, because the tests all came back negative.

In the process, I read (albeit on Wikipedia) that: "A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United Kingdom and Europe with a diagnosis of Down syndrome were terminated." This shocked me. I was just still for some 30 seconds, trying to understand that statistic. (Some biology friends later explained that this was for people who had specifically tested for it, which means people who knew there was a risk but didn't test and kept the baby are not included, but still...).

I also found out the sex of the baby. At around 14 weeks of pregnancy. This was through a phone call - which probably shouldn't be the way the test results are announced, now that I think of it. But my OBGYN (the test was through a hospital and lab, not my doctor) was a bit surprised they told me the sex. Her surprise surprised me, until she explained that there is controversy over whether or not hearing earlier than around 20 weeks might allow for more gender selective abortions. It is earlier, you're not there seeing an image, with a doctor near you to discuss the outcome, etc. Interesting. For us, we were happy either way, so it did not make a difference. But it made me think more about the OBGYN/patient relationship.

So, in the end, we spent a lot of money (these new blood tests do not come cheap) on this journey, but it was a good use of the cash. And we are lucky to have been able to afford it. And I've yet again had time to be a bit more thoughtful about life, death, and babies. Never a bad thing.

Pregnancy loss and infant loss

There was a day last week that I posted a link in Facebook to a New York Times article - about pregnancy loss and infant loss. I don't usually do these kinds of "share if you know someone who has gone through...." posts on Facebook. I may have done once before for the issue of depression.

Still, it got me thinking. I'm pregnant now, apparently successfully, with my second child. I've been  through fertility treatment for both pregnancies, and it has taken an average of 3 years each time to get to a pregnancy that made it past 12 weeks. There were many many months of sadness and feelings of hopelessness (and a fair dose of bitterness at all the pregnancies around me) - something like 50-60 rounds of "Maybe I'm finally pregnant this month. Did it work? Shhh, don't hope too much. I'll just assume I'm not until I can take a pregnancy test. Why not just wait until after my period is supposed to come? But what if that was a pang of something other than cramps coming? Shit - no....there it is, I'm not pregnant. Again."

And after a miscarriage at 10 weeks a few years ago, most of my early pregnancy excitement got wiped away. We had told many people we were pregnant, and then, we had to go tell them we weren't. We had to un-imagine the due date and all those thing that went with it. I finally stopped thinking about the due date and what could have been, about 6 months after friends' babies conceived around the same time were born.

I am extremely lucky to be where I am right now, with one child here and one on the way. But it is luck, fortune. There is no greater purpose or reason I got pregnant and it stayed this time, but didn't 2 years ago. Or that the first time worked. I approach pregnancy in a very different way than some who have easily gotten (and stayed pregnant) without help from the medical community. But I am not more or less deserving (because of God, or because of what kind of person I am, or anything like that) of what I have gotten.

And the book I just finished, a memoir about going through the inability to have children (Silent Sorority by Pam Tsigdinos) got me thinking, once again, how going through pregnancy difficulties changes you. I found the author's writing to be extremely powerful, and helpful, for clarifying a sense of loss. In her case, the loss is of never having children. And there is nothing she can do that will erase that loss. She will have a different life now. It will not be all sadness, but Mother's Day will always be bittersweet for her, because there are things that happen to us in life (inability to bear children) that are not erasable by other, not quite same, things (being an aunt, an adoptive mother, etc.). What I appreciated most about her writing was the willingness to just acknowledge this fact - you don't erase monumental losses from life. It isn't fun, it is hard to know how to sit with someone who goes through them, it is scary, but it is authentic.

So anyway, here, at the end of a kind of meandering, not-so-well-written post, is my point. I've been thinking about pregnancy loss these last few weeks, and reading about how often it is a silent condition - to be not pregnant but really really want to be and have been trying. There are no un-baby showers, or cards, or such. And yet, infertility is a very real part of some women's (and couples') lives. And the lighting of a candle at 7pm last Tuesday was a beatiful gesture. But it struck me as still too silent - for me. This, then, is my add-on.

An empty womb, where no pregnancy has ever been but has been hoped and prayed and wept for. A womb that held a being, but only for a while, not long enough to be born. And a being that survived for long enough to be a baby, but only for a while. Each situation is different, and people have gone through each have gone through unique processes. And this is meant to recognize the feelings of loss.

It will be going up on my Facebook profile for a few weeks. Because even though I'm pregnant right now, seemingly successfully, my miscarriage has defined how I approach this pregnancy - with caution, and with reserve. And it has helped me in the past to know that others have gone through this, too.

If you've been through a lost pregnancy or baby, and want to put it up, too, feel free to grab the image.

No deal

I didn't get the job. Didn't even get called back for the second round.

Crap.

I'm not all that surprised since I can't do the teaching in German that they wanted (in addition to in English, c'mon, I'm not that out of it to have applied to an all-German job). But still, dreams of having found my new little clan, like, actual human beings to see on a daily basis, that just went out the window again.

They were nice. And even asked me to propose a workshop I could teach for one of their programs. And that is lovely. But it also means me sitting some more, alone, trying to be inspired. And that well has just about dried up, people. It is 2:30pm on a Wednesday and I have yet to leave the house. The one person I interacted with who wasn't family was the dishwasher repair guy. And let me tell you, he got an earful of my carefully constructed logical arguments on what wasn't the problem with the dishwasher. The German words I used to make said arguments were probably only right 60% of the time, but the arguments themselves should have been quite impressive coming from what appears to be a stay-at-home housewife.

Well, ok, is a stay-at-home housewife at this point.

Because I didn't get the job. Crap.

I'm gonna go take a nap now, and think about what I can do when I wake up (in addition to some dishes I'm going to have to go wash by hand...again.).

60 seconds more

My brain is usually revving like an engine, overflowing with ideas and thoughts, when I'm feeling normal. Which I'm not feeling these days. I'm pregnant again.

Which is also why I've not written in months.

I've been out of it. Only thinking one thought at a time. Or per day, even, other than "blech, I feel bad again, and I'm not sure if I'm hungry, but maybe eating something random will help."

I'm slow. I'm sure I was slow last time, with A in my belly, but I notice it more this time.

Until about a week ago, thinking about writing made me nauseous, as did trying to do anything in German. Thinking, in general, made me sick.

I'm better these days, a fact for which I am extremely grateful, and German doesn't make me want to throw up anymore. But I'm still slow.

And there is a sweet little silver lining to that slowness - I've slowed down to a better pace for many of those around me. I'm not as impatient, mostly because I'm just tired, and really happy to just sit for another minute. Or twenty.

I routinely take another minute, another 60 seconds, waiting for A to hear or comply with something I've asked of her. And with the dog, I take another 60 seconds to let her sniff a spot I would have formerly pulled her away from once she'd done her business.

I don't try to cram 3 events (or even errands) into an afternoon with A anymore, and it feels much more sane. More calm. I like this version of myself better.

Who knows if I'll be able to keep it up once I'm no longer pregnant. It is hard to calm my thoughts and impatience. And to calm the fears of not having accomplished enough in a day of errands and emails.

At least I'll have had a good many months' practice.

What to expect...

One of our nieces is pregnant for the first time, and while we were back in the US visiting family, she said "If you have any advice on pregnancy, let me know." Turns out M and I have about the same advice, at least at the top of our list - "don't read What to Expect When You're Expecting."

That may not have been the only pregnancy book to give me worries, but it definitely provided me with the most of them. It can read like a compilation of the worst things that can happen in pregnancy, aggregated over all women who have been pregnant. So it is like reading this laundry list of doom, and you wind up expecting to experience all of it. Varicose veins, ectopic pregnancies, listeria, stretch marks, vomiting, and on and on. And no woman has all of those. I mean, come on, those of us who have miscarriages at least don't go through Braxton-Hicks contractions and those who get to giving birth, don't go (at least during that 9 months) through miscarriage. It can't ALL happen to one woman during one pregnancy.

And it is less likely to, according to the book, as long as you fruit-juice-sweeten the hell out of your diet, in place of sugar.

I stopped reading that book pretty soon after picking it up, when I was pregnant with A.

I'd say my second piece of advice, especially for a woman who is used to being super busy at work is to give yourself a break. It isn't the rest of your life. If you can afford to, take some time off. Nap, ever day. Instead of trying to keep up being who you were (and will be again, sometime after they turn 12) when you could sleep in, not wake up at 1am with insomnia and heartburn, and weren't throwing up all the time. Rest. Your body is doing a really big job, and your brain can just step aside for a bit.

Oh, and, no one is every really ready for the baby, so don't wear yourself out trying to have the perfect pregnancy or birth, or being completely prepared. You won't even know half of what you'll need until the baby arrives (A didn't need the smallest size onesies because of her birth size, she came two weeks early, and the Swedish baby sling didn't work for us, but the Ergo carrier did). Each kid is different. There is no "best" stroller, carrier, or anything else, and you'll probably burn through your first one in no time anyway, if it works for you. We're currently on stroller #3 and it is falling apart.

Finally, at least in my case, dealing with my issues, my emotional baggage, all that stuff that stands in the way of me acting like an adult - that has been a much more vital part of my becoming a good mother than any matching outfits or appropriate toys or anything else I can buy. Therapy before, and especially after, were the best investments I made in parenthood.

Addicted

I don't really drink. This means that, yes, while alcohol occasionally passes my lips, it is most often at the urging of someone well-meaning, who likes the taste, trying to make sure I don't miss out. On an amazing beer (gross), or wine (almost worse), or mixed drink (I can still taste the booze, that's the problem). About once a year I'll have something like madeira or some other really sweet wine. But even then, I'd much rather have dessert itself. The whole huge piece of cake.

And I've never been addicted to things one can consume - sweets, caffeine, drugs, cigarettes, booze. The first two, I can live without (although I regularly don't), and the last three don't float my boat.

I may be a bit addicted to shopping as a means to making myself feel better.

I am more addicted, however, to feeling busy. To doing the right things. And it is this that I'm trying to do a bit less of these days. Trying to stop trying to cram in all that I could do, for about 20% less doing.

I'm currently missing a large piece of a tooth. It kind of just fell out last week. Instead of a rogue popcorn shell, I pulled out a quarter of a large tooth. And, hours before being due to leave on a trip, I was sitting at the dentist's, hearing that I'd have to come back 5 days later. So, suddenly my rushed day was quiet. I had an extra hour and a half left. More, maybe.

My first instinct was to do as usual - rush out to try to get even better rain boots than those I'd bought at the hardware store for this trip. I could make it into town. I could probably find a shop that carried better ones. It could make the trip better.

And then I stopped. Partially because my stomach told me to hold the hell on and go get some lunch first. But also partially because it is okay to be stationary. To not be rushing from one thing to another, in search of an even better thing to add to one's already nice day. Last Saturday, it was deciding to just sit at the train station with A's Kinder Egg and my newspaper, while she had time to eat, and we had time to just sit. To watch trains go by on platform 1. To watch people. To see the Jordanian Royal Army Band members in full uniform walk past us. To chat. This was lovely, and instead of rushing to get to the market, just 100 m. away and go buy Greek food for lunch, and make our Saturday even cooler.

So much better to have time.

I won't always be able to make that call. I'm new at this. But when I do, it has been worth it. No sky has fallen, no one on Facebook has unfriended me, and I get to slow down and notice smaller things. Like the fact that my kid thought a phone booth was an elevator, since she's never seen a corded phone. We took 20 min. while she ate her treat and then stopped in at the phone booth before heading home. She may not have wanted to touch the receiver or buttons this time, but she had the opportunity.

You talk what you want to talk

"Ma-ma. You talk what you want to talk and I talk what I want to talk. ok?"

It is amazing the power of humans to not notice the extent of some of our own behaviors. I was convinced that I mostly speak to A in Lithuanian when she and I are alone, and only spoke to her in English around M or with my friend.

And that she has stopped speaking Lithuanian due to some small change I've made. Not speaking enough once in a while. It was really emotional to be asking her to say words in Lithuanian and hear her refuse. To see her get upset if I asked her to speak it. What was I going to do? How was I going to make it something she wanted to do, instead of something forced (by withholding playing with her or something else horrible like that)?

I was going to start making Lithuanian kids videos! Yes! And find a summer camp in Lithuania to go to after our other travel this summer. And buy more books. Did I mention the Lithuanian Sesame Street that was slowly being planned in my head?

That quote above is something she started saying in response to my asking her to speak Lithuanian with me. Sigh. Heart-gripping sigh.

Ok, little one. Ok. I'll just keep speaking it. And planning and trying not to get too overbearing.

And 3 days later, I've now realized that I really had been speaking less Lithuanian. Because now that I'm back to all the time we're together, there are phrases she is parroting back ("Do you want white or blue?") in Lithuanian instead of answering only in English. I'm able to bring it back, without having to ask.

And sometimes we are both talking what I wanted her to talk.