Sunday, May 25, 2014

Genesis & Why


In less than a week, I've gone from wishing October would hurry up and get here to dreading its arrival.  Let me tell you why.

I am chronically lazy about making prenatal appointments.  Being a Navy wife for seven years taught me this--they had no interest in seeing you in the first trimester, as there's little to be done for you then.  So I had my first prenatal appointment for this pregnancy (pregnancy #7, child #6; I had a miscarriage in 2007) at the tail end of April.  I went to the same midwifery practice I had used for my fifth child's pregnancy, and was happy to see Amy, with whom I'd had my very first visit.  She was just as enthusiastic this time as last.  Because my cycles are long and strange, I told her that dating my pregnancy by the last menstrual period, as is standard, wouldn't work, but I had been charting and knew I'd ovulated on day 25 of the cycle I got pregnant.

Before she came into the room, I noticed the little portable ultrasound machine and hoped for a look at the babe.  Score!  Amy took a quick scan and played the heartbeat through the machine.  Baby was lounging there cute as can be, hand up by its head.  It hiccuped as I, Amy, and Linda (my second child, who had accompanied me) watched.  She printed out a couple of kinda blurry photos, as the machine wasn't the best:

On my way out, Amy had me set up my next appointment, which would be for the anatomy scan.  Even though we never find out gender, I was still really looking forward to this.  The practice offers a DVD of the ultrasound for only $5, and I was going to be danged sure to get it this time (I didn't know in advance last time, so I didn't have any money).  Since I'd verified we could take family members, I decided to take the oldest three kids, but a brain fart made me forget Linda would be at the Gifted and Talented program she attends at another school, and as it was the last of the school year she wouldn't miss it.  So it was me, Erik, Bobbie (oldest), and Esther (number three).

We got there early and I did a check-in on Facebook.  I was so, so excited and happy about this.  I've been a bit paranoid in every pregnancy since my miscarriage, and I wasn't feeling much movement and I was barely showing in spite of being just past 18 weeks by the time of this appointment.  But surely everything was fine.  I'd felt some movement, after all, and had heard the heartbeat and was well out of the danger zone for miscarriage.

Instead of the big room I'd had the last time, we went into a smaller one--the same room I'd had the ultrasound part of the non-stress test/biophysical profile with my son when I went overdue.  There were only two seats and a TV-size monitor.  The ultrasound started normally.  The tech got a picture of baby's profile and printed it and then went to check other things.  I  noticed she was pushing hard on my stomach, but thought maybe it was just because I'd gained quite a bit in between pregnancies.  And she quit talking.  And then she excused herself and brought in another tech to repeat the scan.

And then it went to hell.  They started talking about ruptures and the spine missing and there being only one leg.  They weren't talking to me, mind you, just to each other.  It was as though none of us were in the room.  When the other tech finally left, the tech who'd started the scan explained there were "multiple anomalies".  She had not, she said, done the DVD.  And then she asked whether we wanted the one picture she had printed.  I was crying, and said yes, of course.  That's my baby.  That might be the last picture I get of my baby. Of course I want it.

So we went back up to the midwife's office and waited to have the appointment.  I sent the girls out to the waiting room.  When the midwife came in, I saw it was Lauren, the woman who'd delivered my son.  I'd really hoped to see her again under better circumstances.  She outlined the ultrasound's findings: no diaphragm found, apex of the heart protruding from the chest, intestines protruding from the abdomen, no liver or kidneys sighted, one leg missing, no visualized umbilical cord, and an amniotic band "although they didn't say where it was".  Growth was also three weeks behind.

I asked what the best case scenario was, because this didn't sound compatible with life, and Lauren agreed that it wasn't, and at best I was looking at multiple surgeries and a very, very disabled child.  But probably a stillbirth.  They were referring me to a specialist, hopefully no later than the next day, and scheduled an appointment for me there the next week so we could discuss the findings and how to proceed.

We spent the bus trip home comforting the kids and when we were all home I explained everything to my mother, who was there to babysit the youngest two, and to Linda.  By then the specialist's office had called to set up an appointment for me the next day at three.  We'd repeat the ultrasound with a better machine, maybe do an amniocentesis, and hopefully get some answers.

I updated Facebook with the brief into that there had been very bad news at my ultrasound, though I gave no details other than the "incompatible with life" part.  And I spent the rest of the day trying to keep my sanity.

The next day, we went to the office of the maternal-fetal medicine specialist I'd been referred to.  I signed a consent form for an amnio, which would be shredded if the test turned out to be unnecessary, and Erik and I were shown into an exam room a lot more like the one I'd expected the previous afternoon--there was a comfortable armchair for him to sit in, and a big screen on the wall to watch the ultrasound.  A woman came in and explained she would perform an ultrasound and then the doctor would come in and repeat as needed and we'd go from there.  She wouldn't tell me anything, though.  She did, however, do the usual ultrasound talk--this is the head, this is the heart, these are the fore-arms.  As she performed measurements, I kept an eye on the gestational age guesses, and they were mostly right on target, at most a week off.

The doctor came in toward the end and asked medical history questions.  He complimented me on having had three VBA2Cs, since they're so rare.  He took a long look and reiterated pretty much everything I'd been told the day before.  There was what he termed "a severe umbilcocele" (the whole intestines on the outside thing), and though he couldn't tell it looked possible that part of the heart was protruding as well.  The chest was severely underdeveloped.  There was severe scoliosis, what he described as "an almost 90˚ turn" in the spine.  There were multiple amniotic bands present, indicating a rupture between the amnion and chorion, but they weren't attached to anything.  He asked the tech whether she had been able to get the baby to move.  She had not.  He bounced the wand on my stomach, trying to get the baby to move.  No go.

Finally, I was given a diagnosis: limb-body stalk complex (the title of this blog uses the alternate, and apparently more common, term limb-body wall complex).  For some unknown reason, my baby's organs were outside the body and fused directly to the placenta.  There was only a nominal (2cm) umbilical cord.  It was 100% fatal.  The only good news is that the defect is not chromosomal, meaning in future pregnancies I will have the exact same chance--some 0.7 in 10,000--of reliving this nightmare.  He called in the practice's other doctor to confirm, and double-checked that there's no chromosomal aspect.

What next? Nothing.  There is nothing to do.  The doctor was of the opinion that I can have a normal vaginal birth.  Just don't worry about fetal heart rate monitors, because the baby will either be stillborn or die shortly after birth anyway, so no reason to be rushed into an emergency surgery.  It was actually better than I expected--I'd feared I was doomed to a third c-section--so we thanked him and went home, where we explained the diagnosis to the kids and my mom, and I made a more detailed Facebook post.

We are continuing the pregnancy.  There wasn't even a decision to be made.  The baby has a fine heart, and at the first ultrasound it was galloping along at 157BPM.  I am pro-life, not pro-life until things go wrong.  The only life this child will have is while it is inside me, so I will do my level best to honor that as we go along.


So, why this blog?  I've blogged before, but I walked away from it, annoyed and frustrated with politics and nothing ever changing.  I had zero intention of ever blogging again, and yet here I am.

The why is actually very simple.  When I came home and googled "limb body stalk complex", looking for answers, I also found personal stories.  Every one made me cry.  Every one made me feel a little better.  Every one answered questions that all the clinical explanations of LBWC don't.  It is because of blogs and personal stories on other websites (I have linked as many as I could find, by the way) that I know no one seems to carry beyond 34 weeks, that the baby probably won't live more than a few minutes if at all, but maybe we'll be lucky and get an hour or two.  It is because of blogs and personal stories that I know other people have gone through the same thing I'm going through now, and have made the same choice to continue the pregnancy even through profound grief.

I'm adding my story to these stories in hopes that, in the future, some other woman or man will perform the same Google search and find my story, and that it will help them as it helped me.  My husband is co-author of this blog, on top of working on his own blog, because only one story seemed to be written by a father, and his point of view is just as important as mine.  Eventually I hope to gather these blog posts in chronological order and offer them as a (permanently free) e-book, so those going through this can download it and read and see that they're not alone.

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