Hope springs eternal

What was left in Pandora’s box after everything else was lost?  Hope.

We got the results from our chromosome testing today.  (The testing looks at the common “compatible with life” trisomy chromosomal abnormalities—T13 (Patau syndrome), T18 (Edward syndrome), T21 (Down syndrome), and gender.  It does not test for all chromosomal abnormalities or look at whether there are broken chromosomes.)  Normal.  This is not a big surprise (although I’ll admit it was still a relief).  As far as we know, all of our last four pregnancies also had normal chromosomes.  And look how those turned out.

Today I am 10w4d pregnant.  We are waiting impatiently for that 12 week appointment, because that’s the one where we either found out or would have found out that our last two pregnancies were doomed. 

In the meantime, we’re doing exactly what we promised we wouldn’t do—getting excited and telling people.  This weekend, for example, we were at a very small family wedding.  At a winery.  Yea, it was a little conspicuous that I wasn’t drinking.  So we told a few family members.  And we ended up also telling a few very close friends because we were not going to see them in person again for a while.  Of course it’s impossible to keep people’s expectations in check—they’re immediately like “Miracle rainbow baby that magically sprung into being as soon as you stopped trying/being so stressed out/sold and gave away all your baby clothes/gear/furniture!!!  It happens all the time!!!”  Oh my G-, f- off!  (Of course I did not say, it, but I thought it repeatedly.)  This narrative of stop trying and it will happen is just so damaging to infertile people (and especially women, I think) because it places blame on the poor parents (wannabe mom).  I mean, it’s an odds game, right?  Someone somewhere will get pregnant the first time they ever have sex, and then never get pregnant again no matter how many times they try.  Most of the time, just because you’re infertile doesn’t mean it absolutely positively will never happen, it just means that your odds are lower.  Maybe far, far lower.  (I’ve actually read this is one reason it’s so hard to grieve/mourn/get over infertility—because there’s always that small chance it will happen.  So you can never have full closure.)  So instead of being normal and having a 1/6 (or whatever) chance of getting pregnant each month, maybe we’re like 1/100.  And instead of having a 1/10 chance of pregnancy loss/birth defects, maybe we’re 9/10.  But those odds do not add up to 0.  They just add up to probably not going to happen for you (again), sweetie.  (Actually, they add up to a 1/1000 chance of getting pregnant with a healthy baby each month.  I’m not saying these are actually our odds…. Although sometimes it sure feels that way.)  Regardless, I reject the notion that the only thing standing between me and a Dugger army of children was us trying too hard to get pregnant.  

But can I really blame people for their optimism?  I mean, I feel it too, as much as I really try to keep our expectations in check.  It’s hard to assume the worst.  What a terrible way to live.  But it’s also hard to allow yourself to hope, knowing that there’s still a good chance things will not work out.  I’ve been trying to take my OB’s advice and just not think about it.  Guess how well that’s going.

I will say, that early low heartbeat continues to really freak me out.  I mean, sure, it’s normal now, but it was still pretty slow.  I’ve read a number of medical journal articles that say an early slow heartbeat is a very, very bad sign (even if it’s normal later, although there are others that suggest the opposite) and is linked to an increased risk of miscarriage/birth defects:

•            http://www.fertstert.org/article/S0015-0282(04)00608-9/fulltext: For women with bleeding (threatened miscarriage) in the first trimester, those with a heartbeat of less than 120 were at increased risk for pregnancy loss.  It also said that most of the women who miscarried (85%) did so in the first trimester. 

•            http://egyptianjournal.net78.net/45_13.pdf: This article used a cut-off of 110 beats per minute, and also said most women who went on to miscarry did so by 12 weeks.  It also noted that “if the initial scan demonstrates a slow heartbeat, which indicates a high risk of subsequent demise, a normal heart rate on a follow-up scan obtained by 8.0 weeks lowers the risk somewhat but not entirely.” The study suggested that “first trimester pregnancy demise was 60.6% following a slow heart rate at 6.0/7.0 weeks, and this risk decreased to 25.4% if the heart rate was normal on a follow-up scan obtained by 8.0 weeks. This latter risk, however, was over three times as high as the risk in the control group of pregnancies with a normal heart rate at 6.0-7.0 weeks and a normal rate on a follow-up scan obtained by 8.0 weeks. The incidence of pregnancy demise was elevated regardless of the timing of the initial scan (6.0-6.0 or 6.3-7.0 weeks) or the severity of the slow heart rate (moderately or very slow).”  It cited another study, though, that found “A normal follow-up heart rate after a borderline slow rate, however, was fully reassuring in that it indicated that the risk of subsequent demise in the first trimester was no longer elevated.”  Their cut-off was slower than ours, so maybe I should not be too worried about the increased risk even if the later heartbeat is normal.

•            https://www.ncbi.nlm.nih.gov/pubmed/10447078: This article also found that for fetuses that had early slow heartbeats (< 100 bpm at < or = 6.2 weeks, < 120 bpm at 6.3 to 7.0 weeks) first trimester survival rate was 61.6% for the slow early heart rates versus 91.5% for the normal heartrates.  For those that survived the first trimester, most of the slow heartbeats were okay, but the slow heartbeats had twice the risk of having structural or chromosomal abnormalities: “Structural and chromosomal anomalies, however, occurred more than twice as frequently in cases with slow early heart rates: 5.4% (16 of 299) of the first trimester survivors with slow early heart rates proved to have anomalies, as compared to 2.4% (31 of 1281) of cases with normal early heart rates (p < 0.05, Fisher's exact test). In conclusion, a pregnancy in which the embryo has a slow heart rate at or before 7.0 weeks' gestation and which continues beyond the first trimester has a high likelihood (> 90%) of resulting in a liveborn neonate without congenital anomalies. Embryos with slow early heart rates do, however, have a greater risk of having anomalies than embryos with normal early heart rates.”  This one makes me nervous, because it suggests risks for abnormalities are increased with the slow heartbeat.  That’s obviously my biggest concern now—fetal abnormalities.  Our risks are already super high.  I hate that they’re likely even higher because of the slow heartbeat.

•            http://pubs.rsna.org/doi/abs/10.1148/radiol.2362040880: I think this is the article I cited before. Their cut-off was “slow if it was fewer than 90 beats per minute prior to 6.3 weeks or fewer than 110 beats/min at 6.3–7.0 weeks, normal if it was 100 or more beats/min at less than 6.3 weeks or 120 or more beats/min at 6.3–7.0 weeks, or borderline if it was 90–99 beats/min prior to 6.3 weeks or 110–119 beats/min at 6.3–7.0 weeks.”  They found “The rates of first-trimester demise were 60.6% for pregnancies with slow heart rates at 6.0–7.0 weeks (188 of 310), 17.4% for those with borderline heart rates (103 of 593), and 9.1% for those with normal heart rates (186 of 2034). There were 59 pregnancies with a slow heart rate at 6.0–7.0 weeks and a normal heart rate at follow-up US by 8.0 weeks; 15 (25.4%) resulted in first-trimester demise. This rate of demise was significantly higher than that of 7.2% (28 of 390) in pregnancies with a normal heart rate at 6.0–7.0 weeks and a normal heart rate by 8.0 weeks (P <.001, Fisher exact test). Pregnancies with a borderline heart rate early in pregnancy followed by a normal heart rate had a demise rate of 7.6% (nine of 118), which is similar to those with normal heart rates early in pregnancy followed by normal heart rates at follow-up (P = .84).”  This is the article giving me the most hope—it basically says that if the early heartbeat is “borderline” (which ours would be under their definition) and then normal later, there’s no significantly increased risk of fetal demise.  

•            http://www.ajronline.org/doi/abs/10.2214/AJR.10.4792: This one basically says a very, very early slow heartbeat might not be a bad sign if the baby is measuring behind (ie. the dating is off).  I actually think our dating is a few days off (but not 5, which is what they were looking at), so that gives me some hope too.

•            https://www.ncbi.nlm.nih.gov/pubmed/8029394: This one says very, very slow heartbeats (less than 70) are probably doomed, and most of the ones less than 90 bpm also will not make it.  (They described the outlook as “dismal.”)  In their study, of the fetuses that miscarried, none survived past 10.5 weeks.

•            https://www.ncbi.nlm.nih.gov/pubmed/19389900: This one just says a slow heartbeat before 7 weeks means there is an increased risk for chromosomal abnormalities.  Ya think?

It’s hard not to be completely freaked out about the early slow heartbeat.  Although I take comfort in the facts that (1) it was what’s considered “borderline” slow in some studies, (2) we have a normal heartrate now and (3) we do not appear to have any common chromosomal defects.

Oh, and we also found out gender today.  Back on the theme of hope, both my husband and I have been imagining it’s a girl.  I’m not sure why.  Probably because we have a son and would really like to have a daughter.  And probably also because our last four pregnancy losses were all girls and it would just feel like we haven’t lost as much if this were a girl.  (I know that logic is a bit twisted, but isn’t the idea of a rainbow baby already pretty sad?)  Of course, the peanut gallery (ie friends and family) have theories that we just can’t carry girls, and that’s why we kept having losses.  We had 2-3 losses before we started fertility treatments (ectopic, likely second ectopic, early undiagnosed miscarriage) and then 2 IVF losses after my son where we did not know the gender (blighted ovum and early miscarriage).  It is impossible to believe that those losses were ALL girls.  (Right?)  Now, we do know the four losses after that were all girls, including the two with catastrophic birth defects.  But, like I mentioned, the genetic counselor has said there is no scientific basis to believe we can’t carry girls or that our girls would have these genetic defects but boys would not.  (Of course his working theory is that we just can’t carry anything, and it’s my son that’s the unexplained miracle.)

Well, this one’s a boy too.  Let’s see if he makes it/reinforces the peanut gallery’s theory.