Duke neural tube study

I had a chance to have my interview with Heidi (part of the Duke study) today.  I was very curious to know what kinds of questions she would ask.

As expected, she asked lots of general health questions, family health questions, and questions about my successful pregnancy versus my anencephaly pregnancy.

With respect to general health questions about me, she wanted to know about my previous pregnancies and how they ended.  (An ectopic, a diagnosed early miscarriage, a presumed [by me] early miscarriage, one healthy pregnancy, a blighted ovum after a fresh IVF cycle, a miscarriage after frozen IVF cycle, and my anencephaly pregnancy.)  She wanted to know about health issues—diabetes, thyroid, weight, seizures. (None.)  She asked about mom/dad/sibling handed-ness—they’re wondering if there’s a left-handed link.  (Not for me, we’re all righties.)

With respect to pregnancy-specific questions, she wanted to know about all of the medications I was on three months before and the first two months of my good pregnancy and my anencephaly pregnancy.  I had to go to one of my old posts and just start reading.  “Menopur, follistim, progesterone… [two minutes later]… and a prenatal vitamin.”  She asked about folic acid intake—I took a prenatal in the 3 months before and 2 months of both pregnancies and a supplemental dose of folic acid with the anencephaly one.  (I was at 1.2mg/day, 3x the recommended dose.)  During that same time period she wanted to know about my health choices—smoking, recreational drugs, binge drinking.  (None.  I got nervous when we talked about drinking—I had a watered down pina colada when I was pregnant with the anencephaly baby!—but she assured me they were looking for binge drinking, like 3+ drinks at a sitting, not a watered-down drink.)  She asked about things that may have elevated my body temperature—hot tub, sauna, electric blanket, fever.  (I said no to all, although it was possible I spent a few minutes in a sauna at the gym brushing my hair in the months before I got pregnant.  She said that was also unlikely a problem—they’re looking for activities that really elevate your body temperature…. I realized that I was doing hot yoga before I got pregnant with my healthy kid, but that obviously did not impact me.)  She wanted to know how old I was when I got pregnant, but suggested there did not appear to be a link to maternal or paternal age.  We talked about IVF and she noted that it was associated with an increased risk of a variety of fetal anomalies (strongly with heart defects, weakly with neural tube defects). 

She also asked a lot of extended-family health questions.  Neural tube defects, congenital defects (cleft lip, club foot, hole in heart), learning disabilities, known genetic conditions, stroke before 50, thyroid issues, history of pregnancy loss, multiples, etc.?  (Nope.)  I mentioned my family history of irritable bowel disease.  I have it but manage it though stress management, diet, and exercise.  A light went off—was THAT the cause?  Was I not absorbing nutrients (even though I could not remember having any episodes around the relevant time)?  She did not appear to be concerned, but noted it.

I mentioned my damned cold during the 28^th day after conception and she said that they had heard anecdotally from a number of women who were sick during their first trimester, so it could be a factor.  But she said it might not be the cold at all, just that your body was not absorbing nutrients at the right time.  Or it could be unrelated.

I fretted about the tea—it raised my body temperature! It affected my body’s ability to absorb folic acid!—but she said that despite some studies on tea, they had not seen a link.

This is obviously a research study, so it’s not about me and they are not giving me medical advice, but she was very nice about answering my questions.  When I asked questions about what the research showed, she gave me some (guarded?) thoughts.  And when my questions suggested that I was looking for reasons to blame myself (the tea! the cold!), she was quick to say that it’s really complicated, everybody is different, and they are still trying to figure it out.

She did not seem super concerned about the timing of my miscarriages.  (I mentioned I’d read that there was a theory that prior recent miscarriages could be a link.)  She seemed more concerned about closeness of pregnancies.  Her questions suggested that she thought that availability and absorption of nutrients was the most important thing, and that a mom’s body that had recently had a child might not be as healthy as one that had recovered for a bit.  (Unclear how “run-down” a body of someone who was only pregnant for 17 weeks is, and how long I have to wait to try again.) 

I also wondered if this was something that could be diagnosed on an ultrasound as early as 9 weeks.  She said very unlikely, and that maybe by 10-11 weeks (and certainly by 12) you could see it on a level 2 ultrasound.  I told her we were certain of the diagnosis between the AFP test result and ultrasound, and my OB double-confirmed via ultrasound before the procedure and with the baby’s remains.  She said it is one of the most certain prenatal diagnoses. 

I pressed a bit—I know you’re still gathering information (for 15+ years!), but what are you thinking?  She said environmental stuff is really hard, but exposure to pesticides (like as a farmer), low folic acid, and this corn mold I previously mentioned (although only for people who have corn-based diets and are eating the moldy corn grown in dry climates like Guatemala) all appeared to be risk factors.

She pointed out that there was an outbreak of pregnancies of anencephaly in Washington a few years ago, but no one was able to find any kind of link:

http://www.nydailynews.com/life-style/health/no-found-birth-defect-rise-washington-state-article-1.1402376

To the extent that she gave me any advice, she advised I go on a 4mg (10x normal dose) of folic acid 3 months before conception.  I pointed out that conception already happened—my frozen guys were made at the same time and in the same environment as my anencephaly one.  She said maybe what is important for the folic acid is the mom’s environment before implantation that matters, and not necessarily the development of the egg, so I should start the folic acid early even though I was not growing eggs for use.  (She noted that the neural tube closes 28 days after fertilization, so for many people before they even know they are pregnant, so even if they start taking folic acid when the find out it’s too late.)

Strangely, the call made me feel better.  I’ve been blaming myself for all of the things I could have (or could not have) done better / differently.  But is response to my pursuit of a cause, she summed it up best: No one has answers.  At least not yet.  Maybe this study will be used to help people in the future.  I hope so.

Post D&E emotional struggles

It’s been two weeks since my surgery, and almost 3 weeks since my diagnosis. 

Things are not going well.

If you’d told me that three weeks after my diagnosis I’d still be crying hours a day, I wouldn’t have believed it.  The duration and depth of my emotional turmoil has been extremely unexpected and more than a little disturbing.  

Physically I’m doing fine.  My recovery from the surgery has been great.  I stopped taking the narcotics the day after the surgery, and after the first few days had just very minor spotting.  I have not had any pain, cramping, or anything like that.  

At my two-week post-surgical check-up today, though, the news was not great.  While the important things were good (cervix closed, uterus not in pain, no obvious signs of infection or remaining matter), I did get one bad piece of news—I’m still pregnant.  Not really, of course, buy my body still thinks I’m pregnant.  My doctor suggested most people should have a negative pregnancy test after two weeks, so that was unfortunate.  The good news is that most people who have a positive pregnancy test at 2 weeks go on to have a negative one at 3 weeks.  But it could also be a signal that there is some retained matter requiring a second surgery.  She suggested that because I did not have any symptoms, that was unlikely, but until I have that negative pregnancy test next week I should refrain from sex etc.  They took a blood sample just to check that my blood levels are not concerning-ly high, because in that case they would know there was retained material and schedule a second procedure now.  I haven’t gotten the results from the blood test, but I’m hoping no news is good news. [edit: my HCG is 29, which is good and low]

The other thing that is frustrating from a physical perspective is that I have lost less than a pound in two weeks.  I am somewhere between 10-15 pounds above my “ideal” pre-pregnancy weight.  I thought that at least a few of those would go away just from the surgery.  My stomach is definitely smaller than it was, but I feel like I’m just holding onto weight even though I’ve been eating less and exercising (lightly).  My doctor suggested that my body still feels pregnant, so it’s holding onto that weight / water.  She also said that they fill women full of water via IV during the surgery, and that my body is just retaining the water weight.  I think she was just telling me what I wanted to hear, as I was crying somewhat uncontrollably off and on during the appointment.

Emotionally… I’m a hot mess.  I thought I was doing better last week, but things are up and down.  Today was a particularly hard day.  Being back at the doctor’s office was really hard.  I was never one of those infertile women who had trouble being around pregnant women, but that has been hard for me the past few weeks, and there are lots of pregnant women at OB offices.  The last time I was at my doctor’s office was two weeks ago, starting the abortion process.  I had my post-operative check-up in the same room where I had the laminaria put it.  So, yea, I cried a lot at the doctor’s office today.

I also got fired.  Not from my job (thank God!), but for the first time in my entire career a client fired me.  I can’t say that it was solely because I was somewhat unavailable the last few weeks (there were apparently a lot of things at play, and it was a new relationship), but I am CERTAIN beyond a doubt that my struggles and unavailability played a part.  I’m very glad I was open with people at work (to a degree) about what was going on, but I now question if I should have told my clients as well.  In all honesty, if I’d known three weeks ago what I know now, I would have taken a month off of work.  It would have been hard, but I have been really, really struggling trying to keep things together, and I have not been very successful.   

Also, I have a really bad cold.  (Stupid suppressed immune system.)  I think the stress and physical toll just shot my already weakened immune system to hell.  So on top of everything else, I feel like a bag of hell… and I’m not getting much sleep.  

A friend suggested maybe I should join a grief support group, and if I feel this way in a few days I think that’s what I’m going to do.

I consider myself to be an emotionally strong and resilient person.  I’ve had five miscarriages, albeit early first trimester ones, and I’ve never struggled like this.  I wish I’d known what I was in for from an emotional perspective.  People warned me that I’d feel better, and then worse, for a long while, and I didn’t believe it.  I was wrong.

This has been so hard it’s making me really scared about trying to get pregnant again.  I don’t want to go through this ever again.

The one silver lining—because it’s important to look for some good in any bad situation—I have been really touched by all of the incredibly thoughtful things friends have done.  A friend recently found out what happened and insisted on bringing dinner over this week.  I tried to discourage her, and then this week ended up being so shitty and hard it was really nice.  When I have family and friends going through crappy times—because they happen—I’ll be much better equipped to do and say the right things (or at least the less wrong things).

My number one priority right now is to be a good mom to my kid.  Work, weight loss, all  that other shit can come later.