Monday, November 20, 2017
Since my last update, we had a heartbeat check (normal), a blood test (I do NOT have any STDs—whooh!—still waiting on the AFP test, but we expect it will be normal), and another ultrasound (normal). Yes, you read that correctly—everything looked completely and totally NORMAL. Brain? Normal. Kidneys? Normal. Stomach? Normal. Heart? Normal. Spine? Normal. Head? Normal? Growth? Normal. In other words, normal, normal, normal. The high-risk OB we met (yet another new doctor) was absolutely giddy to deliver the news. She said something along the lines of, “I am excited to inform you that everything looks normal!” When I asked what our chances were of having a healthy baby, she cut right to the chase, “your chances are the same as everyone else’s.”
Do you hear that? We’re ordinary! Yay!!!!! Obviously we’re not out of the woods yet, but unless something terrible happens, we’re having a baby.
Tuesday, November 7, 2017
As I approach the end of my first trimester (one more day!) I’ve started to feel an emotion that I have not previously experienced—guilt for our (accidental) success. I have always been aware of the fact that I am very lucky to have one biological child. I think I’ve expressed that feeling many times in this blog. I have a number friends who were never able to have biological children, or who lost pregnancies that were very, very far along. I am absolutely sensitive to the good fortune I have, whatever else I have been through.
But I’ve never felt guilty that I was able to have that child. Lucky, absolutely. Fortunate, you bet. But never guilty.
With this new pregnancy, though, I have been feeling very guilty. Partly I think it’s because it feels like a gift that was not earned. (Maybe other women who find themselves accidentally pregnant but very excited about it feel the same way?) And part of it stems from the fact that, for better or worse, I have become something of a fertility oracle (guru? know-it-all?) to a number of friends and family over the years. It was painful for me to tell a family member—who has struggled with infertility (and chose not to pursue invasive procedures) and now, past 40, is very unlikely to have a biological child (or adoptive, as they may have waited too long to start the process)—that we were pregnant. (I told her earlier than I would have preferred to make sure she did not hear it from someone else.) During lunch the other day with a friend, she confided that she was not one and done by choice, and she felt sadness that her child would not have a sibling. I felt sick telling her we found ourselves miraculously pregnant with number two. At breakfast the other day, another friend told me how hard it was for her to send her youngest of two off to kindergarten this year and how she would love a third but her husband said no way. I felt sick thinking about telling her that we sent our little one off to kindergarten but were probably going to get to experience it again. Last week another friend called me and confided that his wife has had a series of miscarriages and they just found out that she has very low AMH. He was asking advice about fertility doctors and procedures. While I know they will be happy for us if things work out, I dread telling them while they are going through the process of fertility treatments. It just feels so unfair.
Anyway, I have been feeling VERY guilty. One way that guilt manifests itself is that I am having a hard time feeling joy. Originally my joy was dampened by the fact that it seemed very unlikely to work out. But at this point, while nothing is certain, the odds appear to be in our favor. But I still cannot feel that joy, or, more accurately, I start to feel it and then feel really sad for the many close friends who don’t have what I have.
We had a heart beat appointment on Monday. 160bpm—good. And I’m 14 weeks on Thursday. I keep telling my husband, we can talk about it like it’s real after that 20 week appointment. Until then, I don’t want to talk about names, or make plans for childcare, or start re-acquiring things for a nursery. But, it’s hard to entirely ignore what’s going on. My belly is getting rounder (I am becoming an expert on dressing for work to conceal a pregnancy) and I’m spending time daydreaming about what life will be like if everything does work out. I suppose this feeling of guilt is good in a way, it is a form of recognition of further luck and fortune, with a little bit of you-didn’t-earn-this-but-you-can-still-enjoy-it mixed in. I hope it works out and I have the fortune of feeling guilty.
Thursday, October 26, 2017
I’m happy to report the 12 week appointment went well. Baby’s heartbeat is 144bmp. Normal. Baby is measuring at 11w6d (a day behind as always!). Normal. The nuchal fold was 1mm. Normal. Baby’s head looks round, so no anencephaly. The baby’s bones appear to be ossifying. There are no signs of an omphalocele (or gastrocentesis). The baby’s brain and spine looks normal (regular, no bulge) so there are no early indications of spina bifida. There was nothing suspicious at all in the appointment. Normal, normal, normal.
Of course, it’s too early to diagnose all structural issues. We’re going to have another appointment at 15.5 weeks to look at the kidneys, the head in more detail, the face in more detail (looking for a cleft), the diaphragm, further signs of spina bifida, normal growth, etc. But, as the doctor said, we’ll be doing it mostly to give me reassurance. This was my first time meeting her—she’s at the high risk OB office, and this is my first time seeing a doctor there this time—and she was absolutely lovely. Like the doctors at my OB’s office, she was like we’ll do anything you want to make you happy/comfortable. All you have to do to get the four-star treatment from your OB is lose a whole bunch of pregnancies, including two in the second trimester due to catastrophic development issues. (Not worth it.)
She also said that the 20 week appointment is the BIG one. There, we can really take a look at the organs, including the heart. She said if we survive the 20 week appointment without any lethal issues, we should be in the same boat as everyone else—terrible things can happen to anyone, but we would have a very good chance of success.
Because of my age, she also said I would have weekly monitoring starting at 32 weeks. (Again, assuming we make it that far.)
She said considering this good appointment, and taking into account on our history and age, she thinks we an 85% chance of having a healthy baby. (I love a doctor that will actually give odds!) Let’s see how that matches with my updated odds:
· 5% chance we have spina bifida (diagnosed via 15 week AFP test/ 15.5 week appt.).
· 10% chance we make it all the way to 20 weeks but have catastrophic issues diagnosed then.
· 2% chance something else terrible happens
83% chance I end up with a healthy-ish baby. Okay, pretty much SPOT ON. That’s pretty good, right?
Here’s to hoping my little man continues to be normal!
Wednesday, October 25, 2017
My big appointment is tomorrow. How do I feel? NERVOUS. How am I handling it? Oh, just eating my feelings. I had 2 rice krispies treats and a dilly bar yesterday, and THREE dilly bars today. What can I say, when I’m nervous I eat! (Nom nom nom!)
What am I nervous about? Well, obviously I’m nervous that we’re going to find some catastrophic structural issue, just like we did at our last 12 week appointment (omphalocele, poor spinal ossification, etc.) or just like we would have if we’d had a 12 week appointment for my pregnancy before that one that went that far (anencephaly, which would have been seen at 12 weeks, was not diagnosed until 15 weeks). I’m also nervous that there will be something catastrophically wrong, but we WON’T see it at the 12 week appointment, and instead will see it at our 15/16 week appointment, or our 20 week appointment, or (worst of all) not until after baby is born.
I did some searching on a variety of topics. One was just the general risk of miscarriage, particularly when age is factored in. (I’m 39 now y’all! Hubby’s turning 41!) http://onlinelibrary.wiley.com/doi/10.1046/j.1469-0705.1996.07030170.x/pdf This article says what we all know—miscarriage risk increases with age, decreases the longer baby sticks around, and increases if you have bleeding (which fortunately I do not have this time). However, it did not find an association with previous pregnancy loss and miscarriage rate. (I don’t believe it, but I’ll take it!) The article also says that for losses between 8-15 weeks (the zone we’re in now), 45-70% of the cases are likely due to chromosomal abnormalities. We do not appear to have those—at least any of the common ones.
Another topic was, what are the chances of miscarriage of a chromosomally normal baby after a normal 12 week scan? Well, the internet has an answer! It’s about 0.5%, which means 1/200. That number sounds pretty low, or pretty high, depending on how you look at it. http://onlinelibrary.wiley.com/doi/10.1002/uog.5138/pdf “In singleton pregnancies with estimated risk of Down syndrome < 1:250 according to NT screening at 12-14 weeks, the spontaneous fetal loss rate before 25 weeks is likely to be around 0.5%. NT thickness up to 3 mm does not seem to affect the risk of miscarriage in such pregnancies. Instead, the risk seems to increase with number of previous miscarriages and deliveries, and possibly the risk is highest in the youngest and oldest women.” Ugh again on the old mom shaming.
Okay, the topic that’s really got me stressing—how much does stress impact fertility/birth defects? It turns out, probably some. https://www.nature.com/articles/s41598-017-01792-3 This article looked at a variety of prior studies and suggests that stress does increase miscarriage risk: “Whilst chromosomal abnormalities underlie many cases of early pregnancy loss, the present results show that these psychological factors can increase the risk by approximately 42%.” The article appears to accept that stress does not cause chromosomal abnormalities, but suggests that stress can increase miscarriage risk “from activation of the hypothalamic-pituitary-adrenal axis by recruitment of hypothalamic neurones which secrete corticotrophin-releasing hormone, increasing pituitary secretion of adrenocorticotrophic hormone secretion and hence of adrenal cortisol. This hormone has direct effects on decidual and placental metabolism but also interacts with progesterone signalling. Stress-related early pregnancy failure could also result from suppression of the hypothalamic-pituitary-gonadal axis…. These mechanisms are relevant because progesterone activity is crucial for the maintenance of pregnancy; low levels in early of gestation predicting miscarriage. Among its multiple effects, this hormone contributes to the suppression of maternal immune response to the conceptus.” They also cite a study that “reported a live birth rate of 86% in women with recurrent (≥3) miscarriages who were enrolled into a program of emotional support, compared to 33% in similar women who had no formal supportive care.” Maybe that’s why my OBs are pushing therapy on me! I’m not sure what they would think of my rice krispies bar and dilly bar therapy plan…. (The article also cited an article I’ve seen before that says working out more than 7 hours a week increases miscarriage risk up to 18 weeks gestation. http://onlinelibrary.wiley.com/doi/10.1111/j.1471-0528.2007.01496.x/abstract;jsessionid=549CA759D4EC7D5FF1256DE51DE4C1B5.f03t04)
Here's the one that really bums me out—the potential link between stress and birth defects.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2094125/ Here, the researchers looked at the 2 months before conception through 2 months after conception and evaluated the mother’s stressful life events to see if there was a correlation with birth defects. The mothers answered an 18-item inventory of stressful life events, such as:
whether she or her husband (or partner) had started a new job or lost a job;
whether she or anyone close to her had had a serious illness or injury, serious legal or financial problems, problems with drinking or drugs, or had problems with immigration;
whether she or anyone close to her had been a victim of violence or crime;
whether anyone close to her had died; whether she was separated or divorced or had had serious difficulties with her husband or partner;
whether she had moved;
whether she had had serious problems or disagreements with relatives, neighbors, or in-laws.
Most of the mothers of in the study were Hispanic, many had less than a high school education, and a majority took a folic acid-containing supplement during the periconceptional period. The researchers found that birth defects tended to increase with the more stressful events the women had experienced. The specific birth defects they say increased from stress were oral clefts, neural tube defects (ugh), and conotruncal heart defects. They theorize that stress causes increased production of corticosteroids, which are teratogenic (ie bad). They concluded, “more stressful life events experienced by the mother around the time of conception were associated with increased risks of orofacial clefts, NTDs, and conotruncal heart defects among offspring.”
Of course, if I were a participant in this study, I would have answered no to every single question they asked. But going through fertility treatments—especially after a history of loss—is VERY stressful. Plus, I have a demanding job that can be stressful at times. How do I know if my life stresses—admittedly nothing to those faced by many other women—contributed to our birth defects? I don’t. And apparently stressing out about it is not going to make it any better. So I’ll just have to wait and see what happens tomorrow....And maybe find something to eat.
Monday, October 23, 2017
I thought my appointment today was just a heartbeat check-up, but when I was in the examination room the doctor wheeled in a portable belly-ultrasound and I got to see my little man dance. He was too active to get a heart rate measurement, but the doctor said it looked normal. And the ultrasound machine they use is not good enough to get great pictures, but his little head looks round. Obviously a relief, but the doctor was quick to point out that the fuzzy pictures on her machine were not like the crisp ones we’d get on Thursday at the high risk OB. Nevertheless, she said she saw nothing that concerned her and would be surprised if he has anencephaly. Of course, she acknowledged that our biggest challenge was going to be structural abnormalities, none of which (except perhaps anencephaly) could be seen at this point on this machine. She said she would remain cautiously optimistic.
So we wait.
P.S. His movements seemed normal, which made me wonder if babies with anencephaly move normally. The answer, apparently, is no. https://www.ncbi.nlm.nih.gov/pubmed/3905349 (“In all [eight anencephalic] fetuses [studied] the movements were qualitatively abnormal: they were forceful, jerky in character and of large amplitude.”)
Monday, October 16, 2017
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.
Friday, October 13, 2017
10 week appointment went well. Baby is measuring 9w6d, which is fine. (S/he’s been measuring behind from the beginning.) Baby’s head looks round (but who knows for sure) with a heartbeat of 189. All good.
The ultrasound tech did not see anything to be worried about – not even a subchorionic hematoma. She acknowledged my prominent vascular system, but suggested it just might be because I’ve been pregnant so many times. Who knows?
The doctor noted that the neural tube is closed or its not by now (obviously), but suggested I should stay on the high dose of folic acid until at least my 12 week appointment, when we should be able to confirm no anencephaly. The doctor also suggested that, while 10 weeks is very early to be diagnosing anencephaly (I don’t think baby is even 32mm now, although I forgot to ask about exact measurements), the fact that the head looks round is a good sign. The heartbeat was normal for the last two appointments, and she said she had absolutely no cause for concern that it was slow at the first appointment.
One thing she and I discussed at great length was all of the testing options. She said that the standard tests that do not pose any risk to the baby (the Harmony test that looks for the common chromosomal defects, the 12 week “NT” ultrasound, the AFP test at 15 weeks, and the level 2 ultrasound at 20 weeks) will catch 99% of the diagnosable issues. She acknowledged that a CVS/amnio will catch that last 1%, but questioned whether the risk was worth it. She suggested that a risk of pregnancy loss from either of those tests hovers around 1/500, and said that for someone who would do absolutely anything to avoid a child with a defect, those risks might be worth it. But she basically said, in not so many words, that this is our miracle baby and we’re unlikely to have another shot and unless we saw something that concerned us on those other tests she personally would not take that chance. She also told me a story about one patient—the only patient she could think of that did lose a pregnancy from one of these tests—and how hard it was. Apparently this patient was miraculously pregnant in her mid-40s, but understandably scared because of her age, so she opted for one of those tests and then lost the (genetically normal) baby. The doctor said it was absolutely devastating and not something she would ever want another patient to go through. She also suggested that because these other diagnostic tests are so good, they are seeing less and less patients even agreeing to CVS or amnio.
She was the second doctor I’ve seen in the past month that suggested I might want to see a therapist. I said, “yea, you’re not the first to suggest that, so maybe my responses are not normal?” She said something along the lines of, “no, you’re being very logical and scientific about it, which is totally understandable, but I’ve seen a number of patients in your position and it can be hard to have a normal pregnancy.” Fair enough.
I didn’t ask her about our exact odds of success, but did ask for her general thoughts. She said they were “pretty good.” Hey, I’ll take that.
Here’s my thinking on the updated odds (keeping in mind that I’ve had 3 other pregnancies that went this far, and only one that turned into a healthy baby):
Up to 12 weeks [After yesterday I have to admit—I’ve started to invest emotional energy. Lord help me.]
· 10% chance something else goes wrong between the 10 week appointment and the 12 week appointment.
· 5% chance we have an abnormal chromosome test result after our 10 week screening.
· 15% chance we have another neural tube defect (diagnosed either at the 12wk appt if anencephaly or 15 week AFP test if spina bifida).
· 15% chance some other catastrophic issue is diagnosed at the 12 week appointment.
Up to 20 weeks [At which time I have allowed myself to hope and will be devastated.]
· 10% chance we make it all the way to 20 weeks but have catastrophic issues diagnosed then.
Beyond 20 weeks [Devastated.]
· 2% chance something else terrible happens
43% chance I end up with a healthy-ish baby. The odds get better every day. And if we come out of that 12 week appointment unscathed, I think we have a much better than 50% chance of success. Our last two pregnancies to make it past 12 weeks had issues that were or would have been diagnosed then, so it will be a really, really scary appointment. I want the next 2 weeks to move as fast as possible!!
Tuesday, October 3, 2017
This whole process has been a real whirlwind of emotion. I’m pregnant! I’ll probably miscarry! There’s a fetus! It has a slow heartbeat! No it doesn’t! I’ll probably find out there’s a birth defect! I don’t know how much more of this whipsawing I can take.
I had my appointment today. Based on my last menstrual period, I am 8w5d. Fetus is still measuring behind that day (which is fine), at 8w2d. Crown to rump is 17mm (hence the 8w2d measurement), gestational sac is 38mm, yolk sac is 4mm, heart rate is 170bpm.
Hold the phone, you say! That all sounds normal. Indeed it is. Indeed it is. From the information in my appointment today, I have absolutely nothing to worry about. Except for my history (9 pregnancy losses, 2 after 12 weeks from severe and devastating birth defects) and my age (39). And maybe the fact that I wasn’t trying to get pregnant and thus was not on any kind of prenatal vitamin, let alone high doses of folic acid in an attempt to avoid another NTD. But other than that everything is roses!
I don’t know what to think. I fully expected to go into this appointment hearing that there was no heartbeat, or that it remained catastrophically slow, or that the fetus was falling way behind on development. And I was going to accept that because I felt confident it was just a matter of time that things went south. I was not prepared to be told everything looks great!
So we continue to wait. I’m starting to feel just the tiniest bit of optimism, which means, of course, that it will be all the more crushing when things go wrong. But there’s nothing more I can do but wait, and try to keep my expectations in check.
In the meantime, I’ll have a lot of time to think about this when I’m running the Chicago marathon this weekend—a little slower than I was planning to.
P.S. I am in love with whoever created this miscarriage prediction website:https://datayze.com/miscarriage-chart.php It give you chances of miscarriage by day depending on mom’s age, height, weight, previous live births, and previous miscarriages. They even have a little thing “Nervous about miscarriage? Let us reassure you.” where they give you pep talk statistics. For me, this week, based on my age (geriatric), history (abysmal), and height/weight (sexy as hell), it claims I have about a 5% chance of miscarriage. (Obviously my concern is not miscarriage but birth defects, but still, that’s a nice statistic.) It says, “At 8 weeks, 2 days the probability of not miscarrying is 94.7%.” Still nervous? It tells you, “The probability of your pregnancy ending in miscarriage decreased 8.6% since yesterday, from 5.8% to 5.3%.” Still nervous? “Since becoming pregnant, your probability of miscarriage has decreased 87.3%, from 41.7% to 5.3%.” How fun is that??
P.P.S. Am I nervous about running a marathon at 9+ weeks pregnant? No. Exercise during pregnancy is (generally) good! See:
P.P.P.S. Do not mistake my temporary surprise/increased optimism with confusion about how precarious our situation is. I know our history and have not forgotten we had a slow heartbeat at the last appointment. And a slow heartbeat at the beginning leads to increased changes of miscarriage even if a later normal heartrate: http://pubs.rsna.org/doi/full/10.1148/radiol.2362040880 (“When a slow embryonic heart rate is detected at 6.0–7.0 weeks, the likelihood of subsequent first-trimester demise remains elevated (approximately 25%) even if the heart rate is normal at follow-up. In such pregnancies, at least one follow-up scan in late first trimester is warranted.”) There remains an increased risk of loss through the first trimester: http://www.fertstert.org/article/S0015-0282(04)00608-9/fulltext (“patients with slow fetal heart rate (<120 bpm) in first-trimester threatened abortion may eventually be at risk for pregnancy loss. If it survives the first trimester, the likelihood of subsequent death is low.”).
Friday, September 29, 2017
I met with the genetic counselor the other day. He remembered me from the last time I was there (after my anencephaly pregnancy, before my omphalocele pregnancy was diagnosed). He was (obviously) very sad to see me again. His expertise is genetics and, unsurprisingly, based on our history, age, and the low heart rate, was of the mind that the question was not if this pregnancy is doomed, but when we diagnose what the issue is. Gotta love a realist. We talked through our plan for finding the issue.
The next step is my 9 week appointment next week. Assuming there is still a heartbeat the next step is….
A blood test. The high-risk OB runs a free cell DNA test through Natera that can be done as early as 9 weeks. It tests for the fetal fraction of DNA in mom’s blood—it cannot be done before 9 weeks because there’s not enough DNA there. Even at 9 weeks, they might not be able to get a result, especially if mom is heavy (over 200lbs). Fortunately I’m a skinny-minny (although less skinny by the day) so we are going to give it a try right at 9 weeks. That test looks for common chromosomal issues, including Down syndrome, Trisomy 18, etc. It also tells us gender. (If we did it through the regular OB’s office, we couldn’t do it until 10 weeks. Their testing lab is Harmony.) We should get the results in about a week, although we are not expecting a bad result from that—my genetic problems have not been chromosomal, and the risk even at my age (39) for a bad result is only like 3%.
After that, the next step is the 12 week appointment at the high risk OB. They will do what’s called a level 2 ultrasound, which will look at growth, heart rate, and nuchal cord measurement, and should be able to diagnose anencephaly (which we’ve had in the past) and omphalocele (also something we had in the past). It is not usually able to detect spina bifida or other minor structural issues.
After that, the next step would be another scan at 15/16 weeks, again at the high risk OB. Once again, we’d be looking for major structural defects, including those of the heart. It should also be able to catch a severe case of spina bifuda.
If we have reason to think there’s a chromosomal issue that was not picked up by the free cell DNA test, we could do an amnio sometime around 15 weeks. That test look for all chromosomal issues, not just the common ones. But if we don’t have some reason to think that’s an issue, we likely will not do an amnio.
Also at 15 weeks, we could do an AFP test—which looks for anencephaly / spina bifida. Not sure if we will do that, because anencephaly should be picked up at the 12 week scan, and spina bifida should be picked up at the 15/16 week scan. The AFP test can miss minor cases of spina bifida that would be more likely to get picked up on a scan, so there’s no obvious reason to do it if you’re having those scans and looking for the problem.
The next step would be the 20 week appointment. That’s the big one that would catch most structural issues.
So that’s it. We’re approaching this pregnancy like there’s something wrong, we just want to find it as soon as possible. That’s pretty depressing.
We also talked about what the likely cause is. The geneticist says there’s nothing obviously jumping out at him because we have a living child, so whatever the issue is, it’s not 100% fatal. At the same time, we have had so, so many losses, and they do not appear to be the same thing each time. It’s confounding!
Thinking out loud, here were some of his thoughts:
· It could be a recessive genetic condition. He thinks that’s unlikely because recessive genetic conditions should only have a 25% recurrence, and we have had 9 pregnancy losses (soon to be 10?) and only one live born child.
· It could be a dominant genetic condition. For the same reason, that’s unlikely because there should only be a 50% recurrence, and we are far beyond that.
· It could relate to mitochondrial genetics, which have a unique inheritance pattern and are passed on from mother. (I do not understand this one.) He said this was unlikely because it is not generally related to the issues we see.
· It could be one or more mutations on the MTHFR gene. MTHFR is a common mutation: ½ of the population has 1 mutation, 10% have 2, etc. He acknowledged that nothing was proven, but there is a theory that the more mutations there are the increased risk there is for pregnancy loss and particularly NTDs. The mutations can affect the way you metabolize folic acid.
o https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385168/ (“Methylenetetrahydrofolate reductase mutations, a genetic cause for familial recurrent neural tube defects”)
· It could be a defect in some other way I metabolize folic acid or something else. I wasn’t surprised to hear that because I’d previously read a theory that some NTDs could be caused because mom wasn’t properly metabolizing folic acid. For example, obese women and women with diabetes are more likely to have pregnancies with NTDs.
o https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3982189/ (“Intersection of complex genetic traits affecting maternal metabolism, fetal metabolism, and neural tube defect risk: Looking for needles in multiple haystacks”)
· It could be a germline mosaicism. A mosaicism is when some cells differ in their genetic component from other cells, caused by a mutation early in development. When the mosaicism is germline, that means it affects the eggs or sperm. So, it might be that one or both of my/hubby have some defective/fatal genes we are passing on, but they are combined with normal cells so there is some development, and sometimes they are not fatal (see my kid). The fatal cells do cause problems, if there are enough of them. (To be clear, this means the baby is a mutant.) I read a number of articles on this, it’s very complex.
o https://www.ncbi.nlm.nih.gov/pubmed/3033033 (“Lethal genes surviving by mosaicism: a possible explanation for sporadic birth defects involving the skin.”)
o http://www.nature.com/nrg/journal/v14/n5/full/nrg3424.html?foxtrotcallback=true (“A genomic view of mosaicism and human disease”)
His theory is that it’s likely some genetic alteration of an in important gene in fetal development, either from me or hubby. That would explain the recurrent pregnancy loss with different problems, and would also explain why it does not mean we have 100% loss. He also thought it could be the way I metabolize folic acid or some other metabolic issue. Let’s be honest, it’s probably multifactorial.
We talked again about exome sequencing. He thought it was unlikely to yield results. It generally only provides a potential answer 30% of time, and he thinks our likelihood might be less because we are not seeing the same thing over and over again suggesting there’s a “simple” answer. He told me that in the past year he saw a couple who had a situation eerily similar to our own. They had a living child, but had a number of miscarriages and two pregnancies with severe issues—one with a NTD (spina bifida) and another with severe birth defects. They chose to do exome sequencing and did not get a result.
That made me really sad for this couple I'll never know. Because they're like us.
Friday, September 22, 2017
I had my appointment today. The ultrasound lasted forever. At one point, I thought, this woman would not be torturing me if there were no heartbeat, so I’m just going to ask.
Me: Is there a sac with no embryo?
Ultrasound tech: No, there’s an embryo.
Me: Is there no heartbeat?
UT: No, there’s a heartbeat.
Me: It is slow?
UT: It’s not as fast as we would like.
Yea, of course it’s not.
I’ve already done a post on fetal heartbeat, so I won’t repeat it. (http://3yearwait.blogspot.com/2016/03/hoping-my-embryos-heart-is-beating-like.html) But here’s the gist: slow is bad, fast is good. The faster the better, the slower the worse(r).
I am “dated” (per my last menstrual period) to be 7w1d. Based on my sac measurement last week, I should be around 6w5d. (But I was told sac measurement is not that predictable.) Fetus was measuring at 6w 6d. (I completely forgot to ask for my fetal or yolk or sac measurements. D’Oh!) So I’m right around 7 weeks.
A common threshold at this point (late 6 weeks/early 7 weeks) is 120 and above is “normal,” 110 and below is “slow,” and between that is “borderline.” If you’re in slow, you’re looking at a likely pregnancy loss. Borderline is also at risk.
Heartbeat today was 114. That doesn’t sound too low when you say that 120 is “normal,” but then you have to remember that below 110 is likely to end in miscarriage. So 114 is no good.
If you follow one of the links in my fetal heartbeat post (https://fetalmedicine.com/synced/fmf/2010_27.pdf), it gives you precise measurements based on date. At 49 days (7 weeks) gestation, a heartbeat of 117 is in the 5th percentile.
Yea, when you put it like that, 114 does not sound so good.
Oh, and the reason the ultrasound took so long is because the tech was completely taken aback by the “prominent blood vessels” in my uterus. She was basically like, “in the five years I’ve been doing this, I think I’ve seen another patient with blood vessels this prominent.” We already knew I had a wonky vascular system, so that wasn’t the surprise she might have thought it would be. She also mentioned a “small” subchorionic bleed. Again, that comes as absolutely no surprise. I had issues with at least two pregnancies. (My little man—they resolved—and the gushing one with my omphalocele pregnancy.)
The doctor I met with (someone I have not met before) was super nice. When I pressed her on my chances of success, she said, “I’m an optimist, so I’m going to say 60%.” I appreciated her optimism and honesty, because there is no way there’s a 60% chance of success. But she didn’t lie and tell me to just be hopeful—she gave me a pretty low number (relative to what I’m guessing she would usually say). I asked if I could come back for another check before my marathon—I’d like to know when I’m running if I’m pregnant or not—and she said absolutely. In fact, she told me I could come in every week. Anyway, I have another appointment in just under two weeks.
So, where does this leave us? Well, I’m not going to lie friends, it’s not good. Obviously no fetus/no heartbeat/super low heartbeat would be worse, but it’s not good. I have to update my odds because I did have a heartbeat today, but this still looks like it might be on track to end. For those of you placing money on this pregnancy, here are the current odds:
Up to 12 weeks [Before which I invest only a teeny tiny amount of emotional energy.]
· 30% chance something else goes wrong between now and the ~9 week appointment.
· 20% chance something else goes wrong between the ~9 week appointment and the 12 week appointment.
· 4% chance we have an abnormal chromosome test result after our 10 week screening.
· 20% chance we have another neural tube defect (diagnosed either at the 12wk appt if anencephaly or 15 week AFP test if spina bifida).
· 6% chance some other catastrophic issue is diagnosed at the 12 week appointment.
Up to 20 weeks [At which time I have allowed myself to hope and will be devastated.]
· 6% chance we make it all the way to 20 weeks but have catastrophic issues diagnosed then.
Beyond 20 weeks [Devastated.]
· 2% chance something else terrible happens.
10% chance I end up with a healthy-ish baby.
Again, those odds are not great. But they’re better than 0.
Monday, September 18, 2017
One of the worst things about infertility—and the process of creating/growing a person—is the blame and guilt. When I had trouble getting pregnant, and when I miscarried, I blamed myself for anything that I possibly did that could have caused it, and felt tremendous guilt over so many choices. (Did I wait too long to try having children? Did I exercise too much or, later, not enough? Was I eating healthy enough? Was I taking the right vitamins/supplements, or too much? Did I do too much acupuncture, or not enough? Was I too stressed out? Was it that cold I got that I should have avoided by never seeing people / going into public? Was it because I stood in front of the microwave? Etc.)
In some ways, getting pregnant on accident just makes that worse, because it’s going to prove to people that I was, in fact, to blame for all of those years of infertility/losses. Assuming this actually goes on long enough that we tell people (and I am not assuming that), I’m sure someone will say something along the lines of, “see, you just had to relax and it all worked out.” Yea, stress caused my baby’s organs to grow on the outside of her body and her bones not to harden. Stress also, separately, caused another pregnancy to fail after my baby’s neural tube didn’t close. Stress, obviously, caused at least one and probably two pregnancies to implant into my fallopian tube. It was definitely all about the stress.
Likewise, assuming I end up having a baby with a birth defect again (either born alive or, more likely, passing away/terminated), there’s that voice (either my own or that really shitty friend/family member I tell) that thinks/says something like “too bad you were not on vitamins/not taking folic acid/drinking in the first week/ran that marathon.” Yea, after at least three other pregnancies failed due to genetic issues (and let’s be honest, probably many more), it’s my actions THIS time that caused issues. UGH.
And yet, knowing all of this, and being aware that it’s just not my fucking fault that any of this happened, I still can’t shake the guilt/blame. Nothing has happened yet, so I’m just pre-gaming the blame/guilt, but I know it’s there. If I end up with a pregnancy with a NTD, I’m going to blame myself for not being on folic acid. If I have a heartbeat this Friday, but something else goes wrong after I run my marathon, I’m going to hear those little “what if…” whispers in my head. I have a small cold right now (did I mention my germ factory—I mean little guy—started kindergarten 2 weeks ago? He brought some a cute little art project and a cold his first week). I am already running through my head what I read after one of my last pregnancies—colds in the first trimester increase the chances of birth defects. Dammit!
Okay, so this post is getting away from me. I am literally sick (cold) and tired (pregnant, for now). I am also, figuratively, sick and tired of the guilt and the blame. So I absolve myself right now—whatever happens, it’s not your fault. You did everything right for almost a decade, and you couldn’t get pregnant/lost a bunch of pregnancies. The fact that you may not have been perfect now (and who even knows what perfect is??) is not your fault and does not have final bearing on whatever the outcome of this process ends up being.
Just don’t stand in front of the microwave for the next few weeks.
Wednesday, September 13, 2017
I can’t help but reflect on when things started going badly in my last pregnancies. For most of them, it was right away. For the four that made it past 5 weeks, my blighted ovum went south at my 6 week appointment—when we saw a sac but no embryo. My pregnancy with my son seemed like it might go south at my 6w6d appointment, when we saw that blood clot/active bleed. It ended up resolving at the end of my first trimester—thank God! My omphalocele pregnancy started going south at 5w3d when I started having heavy bleeding. Of course, we thought it had resolved later in the pregnancy and then found out that we had much bigger problems at my 12w appointment. My anencephaly pregnancy went south at 16 weeks, when we got the bad results from our AFP test.
I wonder when… I mean if… things will go south here.
Here are my predictions:
Up to 7 weeks [Before which I invest 0 emotional energy into this situation.]
· 50% chance there’s no heartbeat at my ~6w5d appointment next Friday, or I start to miscarry before the appointment.*
Up to 12 weeks [Before which I invest only a teeny tiny amount of emotional energy.]
· 2% chance we have an abnormal chromosome test result after our 10 week screening.**
· 25% chance something else goes wrong between the ~6w5d appointment and the 12 week appointment.*
· 10% chance we have another neural tube defect (diagnosed either at the 12wk appt if anencephaly or 15 week AFP test if spina bifida).***
· 3% chance some other catastrophic issue is diagnosed at the 12 week appointment.****
Up to 20 weeks [At which time I have allowed myself to hope and will be devastated.]
· 3% chance we make it all the way to 20 weeks but have catastrophic issues diagnosed then.****
Beyond 20 weeks [Devastated.]
· 1% chance something else terrible happens.*****
5% chance I end up with a healthy-ish baby. Those odds are a million times better than I would have guessed last month.
*Based on the fact that so many of my pregnancies ended early, and general risk of early/prior to 12-week miscarriage.
**We are OLD now. I’m 39, hubby’s turning 41.
***The published risk for recurrent neural tube defects after one pregnancy with one is about 5%. Because I was on folic acid and apparently had a folic-acid resistant neural tube defect, and because I’ve had so many miscarriages/other pregnancies with issues, and because I wasn’t on folic acid until part-way through week 5, I think I’m at least double that.
****I’ve read the recurrence rate of omphalocele is less than 1%. Of course ½ of all omphaloceles are associated with abnormal chromosomes, and we did not have that, and we’ve lost so many pregnancies / had other pregnancies with birth defects. So I imagine our “birth defect rate” in general, and risk of omphalocele specifically, is much higher.
*****Always a risk. In at least this one way, I am just like everyone else.