Monday, May 25, 2015

When the baby doesn't kick anymore

I was told that I would feel my second baby kick earlier than I felt the first one kick. I started feeling flutters at 13 weeks, but I wasn't sure if that was the baby or if I was just extra sensitive to belly rumblings.  Around 15 weeks I became more certain that what I was feeling were the flutters of life growing inside of me. And then--amazingly--one day on my drive home from work 15 weeks in I felt what I was certain were baby movements. In fact, they were so strong I could actually feel them when I placed my hand on the outside of my belly. I was so happy and excited, and wished my husband could be there to feel it. At the time, of course, I thought it was only a matter of time before he got to experience those wonderous movements for himself.

He never did.

Strangely, that one magical day was the most active the baby ever was, as least according to my perceptions, even thought I carried her for two more weeks.  After my diagnosis, I never really felt her move again. I wondered if that was because emotionally I did not want to feel her, or if she just was not moving.  (At one point I suggested hopefully to my husband that maybe she had passed away naturally and that we were not going to have to choose to end her life. He pointed out that I hadn't felt her move on the day of our diagnosis ultrasound but she was bouncing all around.)

Although I am very sad thinking about what could have been (she could have been healthy! This was at least partially environmental!), today is the first day I can honestly say I feel some semblance of peace.

They say time heals all wounds. I will never "get over" this. Ever. But I know we made the right decision to terminate the pregnancy, and there is nothing I can do to change the fact that my much-wanted little girl had a fatal and incurable birth defect. And as my belly shrinks and my bleeding slows and those little flutters become more of a memory, I am more capable of taking joy in the things I have instead of being lost in the things I don't.

Sunday, May 24, 2015

Did the common cold and tea cause my baby's anencephaly? Maybe....

Going back to what I could have done differently--I've read the neural tube closes up sometime between the 20th and 30th day after conception (and I've read even more precisely somewhere between the 23d to 26th day).  Because we did IVF, I know EXACTLY what I was doing at that time of my pregnancy.  I took four plane flights (home from vacation in a foreign country, a two-day work trip, and then to visit my in-laws) and I was really, really sick.  I had a bad cold and nausea, the latter of which I attributed to the fact that I had just found out I was pregnant and was suffering from morning sickness.  Could the plane flight have been a contributing cause?  Or, more likely, the really bad cold?  I don't recall having a fever, but I definitely felt like total shit.  (Also, I did not use any cold medicine, so that's not a cause.)

I think the cold may have been a part of the problem, and science might be on my side:

"In a Finnish study, mothers of anencephalic children were more likely than matched control patients to remember having a cold in the first trimester of pregnancy. However, the evidence implicating first-trimester colds as a cause of anencephaly is insufficient at this time to concern the mother. There are no recommendations for serology or fetal surveillance following exposure to colds."

(citing to Kurppa K, Holmberg PC, Kuosma E, Aro T, Saxen L. Anencephaly and maternal common cold. Teratology. 1991;44:51-5,

See also

"Maternal common cold in the first trimester of pregnancy has been reported to increase risk of anencephaly and spina bifida"

(citing to Zhang J, Cai WW. Association of the common cold in the first trimester of pregnancy with birth defects. Pediatrics 1993;92:559-563,

Or maybe it was the fucking tea after all.

"A recent study reported increased risk of spina bifida with maternal tea consumption"

(Correa A, Stolley A, Liu Y. Prenatal tea consumption and risks of anencephaly and spina bifida. Ann Epidemiol 2000;10:476-477.)

I'm sitting here thinking, if only I had washed my fucking hands and avoided tea, I might be gestating a perfectly healthy little baby instead of mourning the loss of a very sick one.  (For the record, today's not going to be the day I manage to avoid crying.)

Saturday, May 23, 2015

The girl who eats her feelings

I thought I would make it through yesterday without crying.  I was wrong.  I rested all day and was feeling good.  After my little guy was in bed, though, I just couldn't hold it together and I had a good (bad?) cry.

My doctor said that many people suffer a hormone drop about 2 days after the surgery (so for me, today) and that I shouldn't be surprised if I'm particularly emotional.  So I wasn't planning on making it through today without crying.  I don't know if it's just because I expected to be emotional, or if it's the first day that I was not focused on the surgery or other things, but today was a hard day.  I definitely was feeling more upset/angry/sad.  

My biggest feeling now is that no one understands what I'm going through.  (My husband is close, but even he has not had to deal with all of the physical bullshit I have.)  I'm not trying to suggest that I have suffered more than anyone else, and I am well aware that there are far bigger tragedies going on all over the world.  But the people around me have not experienced even a fraction of the shit that we have (ectopic pregnancy, years of infertility, five rounds of IVF, four miscarriages, and then terminating a pregnancy ay 17 weeks due to fetus having anencephaly).  I wouldn't wish my trials on anyone else, of course.  But people really do not understand.  And having someone act like they do (we went through infertility too!  I had an abortion in my twenties!  I had a [first trimester] miscarriage!) just really stings.  It's taking all of my energy not to respond to friends--who are really trying to help--by saying YOU DON'T FUCKING GET IT.  So that's how I'm feeling now.  YOU DON'T FUCKING GET IT.

My second thread of emotions swirls around the feeling that I've reached my emotional limit.  If we did not have four frozen embryos, I would happily be done trying to have a second child.  I've spent my thirties trying to get pregnant.  I've given up my body, my hobbies, my time, my money, my happiness....  Okay, before I go off the deep end, I would go through everything we've been through, and more, to have my one wonderful little boy.  I am SO happy that we have our one perfect little guy.  But there's not a lot left in me to keep going for a second kid.

Right now I'm just feeling sorry for myself.  I'm crying and eating sweets and having a glass of wine.  (I didn't drink the day of surgery or the day after, but I've been off my narcotics for over 24 hours and the one benefit of not being pregnant anymore is the freedom to drink.)  The fact that, on top of everything else, I have ten pounds to lose, is a problem that will be solved another day.

Friday, May 22, 2015

Duke neural tube defect study

As I mentioned yesterday, one of our requests for my doctor was that she send a tissue sample from the fetus in for research.  Duke is conducting a genetic study called “The Hereditary Basis of Neural Tube Defects,” to determine the causes of neural tube defects:

I don’t  actually know much about the study.  I found out about it on Tuesday, and contacted the study director (Heidi) that day.  She responded on Wednesday AM and we spoke just minutes before my dilation appointment on Wednesday.  They want (1) a tissue sample from the fetus, (2) blood samples from mom and dad, (3) mom’s pregnancy medical history, and (4) an interview to discuss medical history / pregnancy.  Because we were terminating on Thursday morning, and only speaking to the study coordinator the day before, the most important thing was to ensure that we would have a tissue sample from the fetus.  So at the appointment with my doctor (minutes later) I made sure to clarify how important that was to me that we be able to provide a tissue sample to participate in the study.  I was worried we were going to get push-back, but my doctor was very receptive and agreed to do it. 

It was important to me to be involved in the study, because I do want researchers to figure out if this is genetic, and if anything can be done in advance to warn people.  (Ie if you have a predisposition, go on the super doses of folic acid.)  Also, if there are other environmental triggers, I would want people to know that as well.  If anything at all good can come from this, that would be a great comfort to me. 

I wasn’t sure how my husband was going to feel about it—especially because I sprung it on him last minute at the doctor’s office.  But he was all for it.  He feels the same way I do—if there anything at all good that can come of this, that would be great.

My consent form and small sample of fetal tissue were sent to Duke, and I just found out today that they arrived “in good condition.”  That provides a great relief. 

I’m curious about the questions I’ll be asked. 

One odd thing—the coordinator told me the study has been going on for OVER 20 years (since 1993).  Twenty years!!  Are they actually planning on getting some results??  Okay, that’s not fair.  On the Duke study website there are some short papers talking about some work / preliminary results:

I’ve read that Hispanic women are more likely to have babies with neural tube defects, and the 2014 and 2012 papers talk about a kind of mold of corn they think might be a trigger.  Okay, who cares about eating sushi when you’re pregnant?  STAY AWAY FROM CORN.

The 2012 paper told me what I’ve been worried about ever since I was lucid enough to worry.  Of the 205 women who responded with an anencephaly pregnancy, a statistically significant amount (beyond the general population) engaged in fertility treatments.  I’ve read that one concern about fertility treatments (and IVF specifically) is that it might affect the timing of when genes are turned on and off, and now I’m reading that neural tube defects might be in part because of when certain genes are turned on and off.  Dammit!  Now, before we get too worried, the authors note that obesity and diabetes are well-known risk factors for anencephaly, and yet the self-selected study participants had obesity and diabetes far below the average population.  The authors hypothesized that women with diabetes/obesity with babies with anencephaly were less likely to seek out the reasons for anencephaly (and thus participate in the study) because they already knew what their issue probably was.  Well, I submit the opposite is true as well.  Do you know what women who go through all the research/time/effort/investment of fertility treatments do once they have a baby with anencephaly?  They go looking for ANSWERS.  They want to enroll in a goddamned study!  So while I am worried that my IVF played a roll (and potentially significant one) in the baby’s anencephaly, I’m hopeful that’s not the case.

The 2010 report (and a paper it references) suggests that their research shows a 6.3% chance of having a second baby with a neural tube defect once you’ve had a first, and girl is more likely to be affected.  Unhappy face.

The most interesting paper is the first one from 2004, because it gives a biology 101 lesson about genes, chromosomes, and the genetics of “complex” disorders like anencephaly (which may be caused by many factors, including gene susceptibility and environment).

Once I know more about the study, I’ll give an update.

Thursday, May 21, 2015

D&E phase 2 - evacuation

Today was surgery day.  I’m recounting most of this from memory, and I was pretty drugged-up for large parts of the most relevant portions, so apologies in advance for any misinformation.

We got to the hospital at 6:15am.  (Yuck!)  We had to check-in, then meet with someone about insurance (thank goodness we have good insurance!), then check-in somewhere else….  After I was sufficiently checked-in and wrist-banded, I was called in for pre-operation preparation.  That involved answering a bunch of questions (I verified my name, birthday, and procedure at least a dozen different times), then dis-robing and getting into a hospital gown, then getting under a paper blanket they filled with warm air (I have to get me one of those!), then getting my blood drawn (the guy did a terrible job, it really hurt, he moved the needle all around, my vein allegedly “collapsed” so he had to do it again), getting an IV, etc.  Once that was done, hubby came back.  Throughout the process I met with a nurse, a phlebologist (the terrible blood guy), another nurse (for the IV), an anesthesiologist, a nurse anesthetist, another person involved with the anesthesia, my doctor, and probably some other people.  It occurred to me that almost all of the prep related to the anesthesia.  (If we were doing it in a clinic and I was not going to be totally under, we would not have needed most of these people.  I can’t imagine what that portion of the process did to the cost….)  Anyway, everyone we met was super nice and thoughtful and understanding, and when I occasionally started crying they all rushed to give me tissue, hold my hand, etc. 

We had a few requests for my doctor: (1) handprints and footprints if she could get them, (2) take a blanket back for the baby, and (3) take some tissue from the baby for a study (more on that later).  She said yes to all of them.

As they rolled me towards surgery, I was told that they were first going to give me something to make me forget (maybe midazolam?) and then something else that was going to totally knock me out during the procedure.  I vividly remember arriving in the operating room, but then I have no memory of anything until my husband was walking into the recovery room a couple hours later.  My husband and I discussed later why they had to give me a drug to make me forget—we think it’s because they had to insert a catheter when I was conscious (not pleasant) and didn’t want me to remember.  (Well, I don’t remember!) {edit: I spoke to my doctor later and she said the use of the medicine is for anti-anxiety, as it allows patients to be more calm on the front and back ends, and allows the doctor to use less anesthetic, which makes the procedure safer. She assured me I was asleep when they put the catheter in.}

Apparently after the procedure was done and the doctor went out to talk to my husband, she asked him to join her in a private area.  Because he had seen other doctors talking openly with family members in the waiting room, he briefly freaked out that something bad happened.  But there was no need to worry.  The procedure went smoothly, according to my doctor.  She used an ultrasound to confirm that she got everything out.  She also managed to get two little handprints and two little footprints at our request.  They’re so tiny—no larger than the tips of my fingers. 

I spent a fair bit of time in the recovery room (an hour or two?).  I was groggy at first, and then just wanted to rest before leaving.

I came home and rested for the remainder of the day.  I actually feel pretty good.  When I pee it hurts a bit (I’m assuming from the catheter), and my calves are really sore.  (They put something on my calves before I went in—I think sequential compression devices to prevent deep vein thrombosis or pulmonary embolism.)  I have a bruise from where the guy brutalized my vein, and both of the needle marks hurt.  My throat hurts and I have a cough, both from being intubated.  I feel a little bit constipated from the meds.  And I’m bleeding a fair bit.  But other than that I feel pretty good… although I’m on pain meds for now.  The nurses said it’s easier to control pain than to reduce it later.  We’ll see how I feel in the morning.  My stomach is also noticeably smaller.  I suppose the removal of my placenta, baby, amniotic sac, etc. will do that.

My meds are ibuprofen (for pain and to reduce swelling), Vicodin (for pain), methergine (anti bleeding), antibiotics, Colace (Vicodin constipates), prenatal vitamins, and folic acid.  My husband is acting as my personal pharmacist and monitoring my meds for me. 

Physically I’m doing as well as can be expected.  I plan to rest for the next few days (although I’ll probably walk around more than I did today).  Emotionally… I also feel pretty good.  I mean, it goes without saying we’re devastated, but I cry a little less every day.  

We’ve gotten a lot of support from family and friends.  On one hand, I don’t really want to see or talk to people, but I love getting voice messages, texts, emails, etc. from people.  We have several friends who have sent flowers, food, etc., which is also very nice.

Hopefully I won’t have any complications.  One author working at a clinic in Denver wrote a short piece about the procedure and small chances for complications:

Wednesday, May 20, 2015

D&E phase 1 – dilation

We started the D&E procedure today.  Our doctor seems very nice and competent, but she’s YOUNG.  (She’s been with my OB practice for less than a year.)  She’s one of only two OBs at the office that do second trimester abortions, and her limit is 17 weeks (where we are now).  At one point, my husband asked how many of these procedures she has done, and she said, “oh, I haven’t counted.”  We joked later it was like five.  But I’ve read the procedure is not particularly dangerous (famous last words) so we’re going with her.  I like that we can have it done in a hospital in case things go really wrong.  Our other option would be to go to Planned Parenthood, where they have people who are more experienced.  Because my preference is to do it in a hospital—and be knocked out completely—going with the woman in my OB’s office is a better option for us.

After answering all of our questions, she did a physical exam.  Once that was done, she placed the laminara in my cervix.  They are basically little straw-like sticks made of something synthetic akin to kelp, with little strings at the end.  They look a bit like tiny tampons—they are about as thick as straws, although apparently there are “small” and “large” ones.  They absorb moisture and expand, gently opening your cervix.  My husband and I assumed I’d be getting like 5-10 inserted.  When she was done, she said one “large” on and one “small” one.  She said she tends to insert 1-4, depending on how receptive the patient is.  Because the whole point of the laminaria is to gently open your cervix, there’s no reason to jam them in and hurt you.  Whatever happens with the laminaria before the procedure, they will mechanically dilate you the rest of the way the day of the procedure.  But she said the more dilated you are in advance, the better.  (Ie. The less likely there is for injury to your cervix from the procedure.)

I’d read a lot about the insertion of laminaria process, and it sounded like a lot of women found it to be very, very painful.  So I was a little nervous.  But for me it was not that bad.  It was like a prolonged pelvic exam.  The speculum is always unpleasant (plus it was particularly hot when inserted).  Then she put something in to hold something (uterus?) in place, which felt a bit like someone was pinching me hard on my internal organs.  Then the actual insertion of the laminaria caused some pretty significant cramping.  She had me wiggle my toes, which did seem to help.  But it did not take that long (5 minutes?) and it was not unbearable.  (I was doing heavy yoga breathing, which caused everyone to repeatedly ask me if I was okay.)

I was also nervous about the part after that process.  I’d read some women have very severe cramps, or even contractions, and there’s a chance that this will actually trigger labor (water breaks, actually deliver baby).  When the doctor was telling me that, there was a little part of me that thought that would be ideal.  Of course, labor and delivery is still an option, but because it’s so uncertain as to time and outcome, and there still might be a procedure at the end, it’s not the right option for us.  But if it happened quickly and naturally… well, that would not be so bad.

Anyway, she gave us an Rx for Vicodin in case the pain was unbearable.  I told her I think I have a pretty high pain threshold, but would definitely take it if I couldn’t sleep because of pain.  She said we should have a good idea of the level of pain/discomfort I’d experience a few hours later.

So, after the sticks were in, hubby and I went to lunch, and then I went home and took a nap.  I’ve been taking it super easy since my appointment, but ten hours later I am feeling completely fine.  (My complete lack of pain is actually making my husband uncomfortable.  He’s like, “maybe it’s not working.”)  So unless things drastically change, I can say that the insertion of luminaria, while unpleasant, was not unbearable, and the post-insertion time is a piece of cake.

Tuesday, May 19, 2015

Dilation and Evacuation - the best very bad, horrible, awful choice

Apologies in advance for a mostly stream of consciousness post....

Because I'm so far along (17 weeks when we do the procedure) the best (i.e. safest and easiest) option for termination is dilation and evacuation (D&E).  I'll note that it is currently illegal in Kansas, which is major bullshit, because you know who knows better than a woman and her doctor what the best medical course of action is?  Exactly: a bunch of dumb as shit state legislators.  (Along the same lines, Texas has banned abortions after 20 weeks—you know, when many people first find out that their child has a serious disability.

The doctor explained the basic details of the D&E procedure to us on Friday when we got our diagnosis, but it was a bit of a blur.  (I was crying uncontrollably.)  The doctors are wonderful and followed-up Saturday to check on us and provided more information, when I could process a little better.  And we got even more information on Monday.  We'll know even more on Wednesday when we meet with the doctor who is going to do the procedure.

I've never had an abortion before.  (Well, other than the methotrexate shot after my ectopic pregnancy, but that doesn't really count.... Although if you're a fanatical pro-lifer you'd ban that too and just shrug your shoulders when women die carrying non-viable pregnancies.)  Even though I have long been very pro-choice, I have to admit I was not super familiar with the details of an abortion, and specifically a D&E.  And the reality is not pretty.  (What I have learned does not change my opinion on abortion, but it makes me feel even sorrier for any woman who feels like her best/only option is to terminate an otherwise healthy pregnancy, especially in the second trimester.)

For early terminations, doctors can do a one-day procedure called a D&C (dilation and curettage, used until about 14 weeks).  For later ones, it's necessary to do a D&E.  A D&E is a two-part procedure.  Before we even start in my state (not one of the more restrictive ones), you have to sign a form and then wait 24 hours.  For the first step of the medical process 24 hours later, a doctor puts something described as "kelp-like" in your cervix to soften things up.  The second step, the day after that, is the actual medical procedure where the doctor removes the fetus and the placenta.

Because our baby is alive, it's pretty scary/sad because part of the process involves actually ending the baby's life.  For people who just really, really want to bring a life into the world, that can be pretty hard to swallow, especially when your instinct is to protect your children above all else.  My husband, especially, is having a really hard time with it (although he logically agrees it's the right choice). 

One of our biggest concerns in deciding what to do is understanding whether the baby can feel pain, because that would be horrible.  But I have been repeatedly assured by multiple doctors and what I have read that is not risk.  A fetus does not react to stimulus until 15 weeks, and is apparently unable to process pain until at least 20:

(After 20 weeks, when there's an argument that babies could feel something, doctors will often kill the baby by sticking a needle in it and injecting something.  But apparently that's dangerous for the mom so they do not do that before 20 weeks.  Abortions are generally not available much past 24 weeks.  Yes, this is all really terrible.) 

Our baby will only be 17 weeks when we do the procedure, and is also missing the part of the brain that processes pain.  So both of those assurances help us know that the baby will not be scared / in pain.  (When I told my mom another option was to actually deliver the baby early, she seemed to think maybe that was the more humane route... until I pointed out that in that case the baby would just die during labor / right after birth when its organs shut down.  It's hard to see how suffocating is the more humane route.)  

We've really struggled with this decision (we've cried a lot thinking about this part of the process), but believe it's the safest route for me and for the baby there is no difference if we terminate now or deliver later.  This is the right decision.  I'm sure of it.  This baby cannot live, and carrying it to term will not change that.  (I've read 90-98% of women who receive a diagnosis of anencephaly choose to terminate the pregnancy.)  But that still does not make this an easy decision. 

I want to understand what I'm in for, so I have been reading other women's stories about their D&Es.  If you want a good long cry, go here:

Many of these stories are by women who wanted their babies, but like us found out sometime in the second trimester that their beloved little ones were not viable or otherwise had severe issues.  (The fact that our baby is not viable has also made this easier.  I can't imagine having to do this knowing the baby could live, just with a severe physical or mental disability.)  That's sad enough on its own, but then a number of these women had to deal with other issues, like having to drive hours or fly across state lines to get the treatment they needed, or having insurance refuse to pay because it was not "medically necessary," or facing judgment from their care providers or others, or being forced to go to a clinic (God bless Planned Parenthood) only to have some protestor get in their face.  In that respect, I'm so lucky that I live in an urban area and can go to a hospital and not travel far distances for care and walk through protest lines, that this will be covered by insurance (minus my insurance deductible), etc.

One thing we have been struggling with is whether, and to what extent, it's appropriate to grieve this loss.  Specifically, should we give her a name (at least between the two of us)?  Can we ask for her to be cremated, and take her ashes?  Can the doctors give us a footprint to remember her?  (I think the answer is no, because of the violence of the medical procedure.)  Would it be strange / unhealthy for us to provide a blanket to wrap her remains?  I just don’t know.  I'm tempted to do all of these things.  My husband's instinct is that because we are choosing to end her life, we don't get to pretend she's our precious little baby girl and do any of these things.  I don't agree--even if I carried her to term, we would be delivering her knowing she was going to die soon after (or be stillborn) but there would be no question we would have the right to do all of these things.  We don't love her any less because of this choice, or deserve to mourn her any less.

I called my OB's office and they said footprints / handprints were not possible (no surprise) but that we could send something small to be with her and if we wanted we could request cremation.  In light of that, I did make her a small blanket.

Even writing this is making me cry.  This is a horrible situation, and I feel for any women (or man) who has experienced anything like this.

Monday, May 18, 2015

Anencephaly risk factors

As soon as my doctor told me that anencephaly is at least partially environmental, I heard "you could have prevented this.  This is your fault." Of course that's not entirely true, but I want to do everything in my control to make sure this does not happen again. So I started digging--what can I do next time? (If there is a next time.)

Okay, everyone knows some of the big risk factors: 

Folic acid insufficiency (take a folic acid supplement!)
Maternal diabetes
Obesity (again, it sucks to be fat)
Family history (there is some genetic component)
Teratogenic medications
High heat exposure (no hot tubs)

But I have none of those risk factors and I still had this happen. So what else?

Drinking tea is a risk factor:

The theory is that tea can affect your body's ability to absorb folic acid. Well, that sucks. I drink a lot of tea. (As in 2-3 cups a day.) I thought I was being healthy, but I might have been inadvertently contributing to my baby's death. Needless to say, I am throwing away all of my tea. 

Reoccurring miscarriages are a factor... Specifically a miscarriage right before the pregnancy:

The theory is that either the prior miscarriages could be prior neural tube defect pregnancies, and/or some tissue from the prior pregnancy (up to 12 months later) could remain and affect the development of the later pregnancy. 

Well, that really fucking sucks. My last miscarriage was in October, and I got pregnant this time in February. Maybe my prior miscarriages were because of neural tube defects, and maybe they actually contributed to this one. Sigh. 

But you know what the single biggest risk factor is for a neural tube defect baby? A prior neural tube defect baby. Booooooooooooooooooooo.

Saturday, May 16, 2015


The incidence of pregnancies with a neural tube defect is about 1/1000 (and anencephaly specifically is 3/10,000). But once you've had one, your risk of having another is about 1 in 20.

Some studies have suggested that SUPER high doses of folic acid (4mg, ten times the recommended amount for a normal pregnant woman) one month before conception through the first trimester can further reduce the risk for this high-risk population:

There does not appear to be a risk of cancer (a concern because folic acid helps new cells grow) but high doses of folic acid can mask B12 deficiencies. Overall it sounds like for people who have had a baby with anencephaly, the benefit far outweighs the risk. 

What about for us? We have four frozen embryos made from the same cycle. Are they already doomed?

Friday, May 15, 2015

Scheduling my abortion

Sometimes life feels so cruel and so unfair.... This is one of those times. If you asked me this morning how I'd be spending my afternoon, "scheduling my abortion" wouldn't exactly have rolled off my tongue. But, life throws us curveballs, no?

Things had been going great. I started to feel some pretty strong movements at 15 weeks. I was showing and telling people at work. I had a normal 16 week appointment, and my husband and I were debating when to tell our son about his new baby sister. (Hubby wanted to do it this weekend.)

Then, over lunch today, I got a call from my OB's office. Message was that there was an "abnormal" result on our AFP blood test. I was worried, of course, but not frantic. I'd been told the test delivered a lot of false positives. But I called back right away and the doctor was clearly very concerned. She indicated that false positives were common, but usually for women with multiples or wrong due dates. Clearly neither applied to us. She left open the very slight possibility that there was a lab error or I had some kind of tumor (strange to hope for cancer) but suggested I should be prepared for the very large possibility that something was seriously wrong.

Apparently the AFP (alpha fetoprotein) test measures fetal proteins in your blood. A high level can indicate very wrong, such as spina bifida or anencephaly (partially formed brain).  It can also be an indicator for chromosomal abnormalities.

Obviously I was scared after the conversation with my OB. She wanted to get me in for a level 2 ultrasound ASAP, but seeing as how it was Friday afternoon and one was not available, she suggested a basic ultrasound first, which would at least show if something was seriously wrong. I tried (unsuccessfully) not to worry too much, but spent the next hour reading about spine bifida and anencephaly and false positives on AFP tests.

The ultrasound was bad. The technician was silent when she started, but even I could see on the screen that things were not good. I said, "if you see something bad, you can tell us." She said, "I do." And then pointed to the obvious place where the top of the baby's head should have been. It was missing. The baby was otherwise totally healthy. Measuring normally, Bouncing all around. (I did feel her move.) But she had no brain.

We cried for a long time.

The doctor confirmed it. The baby has anencephaly. Sometime between weeks 5 and 6, our otherwise healthy baby's neural tube did not close at the brain. The doctor said our AFP measurement was 11.82 multiples off the median--the highest she'd ever seen. And the ultrasound confirmed that our little girl was missing most of her brain and was going to die sometime between now and soon after birth. There is no cure. There is no hope.

And whatever caused it is not (entirely?) genetic, it's environmental. Not a lack of folic acid for me--I'm on a double dose of folic acid. I pressed, what caused this? What could I have done differently? She cautioned, don't blame yourself. But then she did ask, did you have a fever? Were you in a hot tub? Diabetes? Of course the answer is no to all of the risk factors, and yet here we are.

Because anencephaly is fatal, the next step was easy for us. We want to terminate as soon as possible. Because I'm so far along, only a few doctors will even do the abortion. And apparently it's a bit of a scary and dangerous process. But we found someone and are going to start (it's also a multi day process) next Wednesday. The doctor gave us some idea of what we are in for, but I just don't want to think about that now.

So we're at home now, grieving. Getting ready to abort a much-wanted and already loved baby girl at 17weeks.