Confrontation

I probably sounded a little more negative in my last post than I really intended. I actually feel very positive about this little girl, and all her little kicks, punches and twists. However, I won't deny there is still a tiny bit of anxiety that arises from time to time and because it's not something I really want to unload on my relatives and friends, I use this place to blow off a little steam. But as an indicator of my optimism, I have bought three, not overly girly but still slightly feminine, pieces of clothing in the last week. The tiny bit of worry I have left does make me a little more anxious to meet her. But I'm trying not to wish away these last few months of pregnancy, and of LM's only child status.

On an entirely different note, I had a fight with my mother this morning. It's funny - I don't shy away from confrontation. D and I argue. My brother and I argue. And I argue at work all the time. But they're usually pretty clean arguments, easily resolved and not ones where I go to bed angry. My mother and I are very close; she does a ton for LM and helps us out a lot. I probably talk to her 3 to 4 times a week.

Last night D, our family, plus my younger brother and his fiance, all had dinner. At her own suggestion, she brought food over here. D helped her make it, and I lay on the sofa, admittedly like a lump, because I was feeling my usual evening pregnancy tiredness. Evenings have been rough for me since the start of this pregnancy, but I will admit that I could have been more helpful. Then we all ate, raved about how good it was, and talked. I asked her not clean up, saying we'd do it later, but she did anyway. My future sister-in-law gave us a beautiful quilt she made for the new baby and we all oohed over that. Then my mother gave LM a bath; I don't think I asked her to do it, but I might have hinted. Honestly, I thought she would have wanted to because she won't see him for several weeks, but maybe that's rude. After the bath, mum stood around and sulked and I asked her if she was upset. She said she was not. And then she left. Little Bro and I pondered what might be the matter, and decided not to try and guess. She is prone to sulkiness (for example, at my older brother's WEDDING, at Christmas dinner and many other recent occasions). Most of time, she won't ever confess what it was about.

Today she calls me from the airport and tells me she's "hurt" I didn't talk to her more, and that I take her for granted. She said we spent too much time talking about things that did not interest her and people she does not know. That totally surprised me. I'd like to think I have some degree of emotional intelligence, and I don't think we "left her out" in anyway. But she claimed I didn't talk to her and only chatted with my brother's fiance (who was sitting next to me, as opposed to my mother who sat on the other end of the table).

My reaction was not very apologetic. I was a bit defensive about my behaviour, and then I said something about her being unfair. I wrapped it up with a comment about how she "brings it upon herself". At that point she either hung up, or we got disconnected. I'm not sure, but I wasn't able to get through to her afterward. I did, however, leave her a rational message wishing her a safe trip.

I am beyond annoyed about it. I find her behaviour quite childish. But at the same time, I feel sorry for her. I know she's probably lonely. She's been single for 20 years, and her sister and brother are both dead. She has friends and work, but few extremely close friends. She has this fixation on Little Bro and him not being attentive enough to her, which she complains about to me all the time. I am finding it increasingly find hard to sympathise with. For a guy in his 20s, my younger brother is actually remarkably considerate. He's not as fawning as my older brother, but then my older brother is 35, and has a few years more of life experience.

I feel guilty too - she DOES do a lot for us, and particularly LM, and I know we take that for granted. But I just feel these particular criticisms were unwarranted and the way she told me did nothing to make me sympathise more with her point of view.

She's gone now for two weeks and I have no means of contacting her other than e-mail, so I am trying very hard to write a rationale, non-defensive e-mail - to say I'm sorry for how she feels without either making excuses or admitting to something I don't think I've done. I don't think I'm quite there yet.

Genetic Counselling

We met with the genetic counsellors today. You know what's awkward? Running into a former colleague who consults for the the health authority, and who was all "Hey, how are you? What are you guys up to?" as you're fidgeting under the big sign that says MEDICAL GENETICS.

In the counselling section, they have two waiting rooms. One for the families with all the little babies, many of whom are presumably affected with the things being screened. And there's one for the pregnant women being counselled on, among other things, the possibility of termination (that's the elephant in the room during these consultations.)

Very, very mercifully they had received the results of our serum testing in time for the consultation. We were told it "screened" negative at 1/3100. This is probably familiar territory to most of my readers (all 6 of you! Ha ha) who have been through this recently, but the screening is not diagnostic. It gives you a probability. In our case, anything higher than 1/350 is deemed a "positive" screen. Most, but not all women carrying Down Syndrome babies will screen positive. Many, many people who are carrying healthy babies will also screen positive. Anyway, if you're screened positive you're offered amniocentesis which can give you a definitive result. The reason not all women are offered amnio (aside from costs, obviously) is that it has some risks for the fetus.

The screening test is not perfect: some Down Syndrome babies (we were told 22%) screen negative. But when you look at the math, it's highly likely percentage-wise that if you screened negative, that you are indeed negative, and not having a DS baby. So we breathed a HUGE sigh of relief knowing we were negative.

The markers were still a concern, and they discussed those with us. In the counsellor's opinion, it was still appropriate to offer us an amnio given the fact that there are two markers, so I assume that they feel that two markers brings us closer to the 1/350 mark which is the usual amnio cut-off. However, there is no real research to give us an accurate number of what our two particular markers mean.

And if you want, they will discuss termination - apparently, you can terminate for chromosomal abnormalities up to 24 weeks. Amnio results take 2-3 weeks because it involves them culturing cells and growing them. (See the problem here?). But you can get preliminary results in 72 hours.

So the next question, given all this information, is why have the amnio? In our case, we had pretty much decided that we would not be terminating a fetus at the gestational age we are currently at (22 weeks, plus whatever time it takes to get the amnio booked and get the results and schedule the termination). I think it's a very personal decision, and I understand why people would make a different one. But in our particular situation, I don't think that's a choice we'd make. So if we get the amnio, it would be more for peace of mind, or to "prepare" ourselves.

Part of my is tempted to know for sure, one way or the other. If our screen had been positive, I would definitely want to know. But right now, I feel like the chances this baby has DS are very, very, low. And there are lots of good indicators - for one thing, she's big and DS babies are usually small. And her femur length and nuchal fold (other, imperfect "soft" markers) are good. And there's nothing structurally wrong at all.

On balance, I think going through the procedure and waiting for the results would likely increase my stress level for quite a while. And then I'd worry about miscarriage. And of course, the worst case scenario is that I have the amnio, the results are negative, and I end up somehow damaging a healthy fetus. Finally, I don't believe that knowing in advance would really prepare me if she does in fact have DS. So although I've given myself a day to consider this, we're fairly certain we will not do the amnio. They also confirmed that a home birth is still a possibility, even if our baby was a "confirmed" Down Syndrome baby, so I don't feel I need the information for that reason.

Overall, we both feel confident that this is a healthy baby and we're going to proceed on that assumption.

I know I sound pretty calm and rational, but I have had a lot of anger this week too. I'm angry at the process. It seems kind of fucked to me that some radiologist sitting in a room can write something like "multiple markers of aneuploidy" and never get to see the mother's face when she reads those words. I know the reports aren't written with the expectation they'll be read by patients, but isn't that kind of fucked too? I will never meet that doctor or be able to ask him any questions about how he came to that conclusion; no one can answer the question about how confident he is in the measurements he found, or how often he sees this. I'm left dealing with the middlemen and the generalists.

The kidney measurement, by the way, was 0.4 mm outside of normal. Seriously. I have friends who have been told that their babies are going to weigh 10lb when measured by ultrasound and they come out weighing 7 lb, yet this guy is making a finding based on a measurement of 0.4mm. And maybe that's completely legitimate and highly accurate, but how am I supposed to feel confident in that finding when I can't ever ask any questions of the only person who actually understands how it is you measure these things? I probably would never even know it was only 0.4mm off normal except that I specifically asked to receive a copy of the report.

I also think these soft markers are slighty bogus science. Yes, they do mean an increase in Down's. And it is still a possibility that our baby has Down Syndrome and these markers, in retrospect, will have been a good clue. But overall they're a pretty piss-poor predictor. No one can tell me how many healthy babies have these two particular markers, versus how many Down's babies do. If they're going to use these to make recommendations, shouldn't there be some more information about that?

I will say the one thing I'm not angry about it is the care I got from the individuals I actually dealt with. I got a half hour conversation with someone explaining the results, I got faxed the report (at my request), and I then got a 45-minute meeting with the midwife and a one-hour counselling session. I feel that, ultimately, I've been taken good care of and that, based on the limited knowledge we have, I've been given all the relevant information.

And I'm repeating my mantra: Baby is happy, healthy and strong and growing just as she should.

NB: Edited a wee bit for clarity.

Waiting for More News

Didn't mean to leave you all hanging like that. At this point, I don't have much new information. I had my appointment with the midwife, who said the major concern is Down's Syndrome because if it were something like Trisomy 18, we'd likely be seeing major structural abnormalities "incompatible with life." I'm not sure it was the most reassuring meeting, as I would have liked to hear her say unprompted: "Don't worry, we see this ALL the time and it's almost always nothing." But I didn't really get that, although she did say that sometimes they see these things and it turns out okay.

On Monday I will go to see the medical genetics counsellor and hopefully that person can give me a bit more insight into what this all means. I am still awaiting the results of my quad screen, so I'm not sure I'll have them in time for that appointment, which is unfortunate. But I'll be able to talk about possibilities, and depending on how the quad screen comes back and what the counsellor says, I will make a decision about amniocentesis, which is the only way to have a definitive answer about all of this.

I've also been talking to people in real life and on message boards and have gathered lots stories in which ultrasounds were wrong. I spent an evening poring over medical journals. There was a big meta-analysis of studies on "soft" Down's markers done in the Journal of the American Medical Association which states that they're really not a very good indicator in isolation. However, most of the studies make statements about it being a better indicator when there is more than one. On the bright side, it appears that the two markers we have are among the least worrisome, at least in isolation.

Emotionally, this week has been really, really tough. Looking back, it's been a fairly crappy year I've had- my aunt's death from breast cancer, my uncle dying in his apartment, dealing with all the family drama around my aunt's estate, D trying to find a new job in this recessionary economy, me waiting to hear back about being hired on at the firm. Still, this week has by far been the most stressful, tearful, sleepless one I've had. At times, I've convinced myself the child definitely has Down's. I stare at her ultrasound picture and try to see if she does. For several days I winced when she kicked or punched me, because it was a reminder of what was going on; I've been trying to block it out by working and sleeping lots. At times, I've wished this whole pregnancy away.

It's not that I have any doubts about my ability to love a child with Down syndrome. I volunteered with special needs kindergarten for a year, and I absolutely loved every minute of it. I know I would and could. It's the adult I worry about - the one who will be dependent on me for life, financially and emotionally. And the health concerns and costs. And dealing with a female child with an intellectual disability, who will vulnerable to being taken advantage of, terrifies me. It's funny, if something happened to LM and he was dependent on me, I'm prepared to be 100%, 200% there. But I don't even know this baby yet, and rightly or wrongly, I feel like this is not what I signed up for. Of course, neither did she.

But as the week has gone on, I am feeling more positive. I've actually FINALLY hit the part of my pregnancy where I don't feel sick and tired constantly. And I'm trying to put negative thoughts out of my head and send her positive ones when I feel her little punches and rolls. I try to repeat the mantra that my baby is happy and healthy and growing exactly as she should. And if she does have a disability, Down's or other, well I guess we will deal with it. But I'm not embarrassed to admit that I really, really, REALLY hope she doesn't.