Thursday, January 19, 2012

No Answers

I like to know things.  I like to do research.  I like to read many opinions and ideas about a subject before making up my mind.  I like to find the answers.  I like to analyze problems.  I like to connect dots and draw conclusions and support them with evidence from the text.  I spent the last ten years of my life practicing this skill.

I don't like it when I can't figure something out.

Unlike my pregnancy with Eliza, I have done very little reading and research this time around.  I'm actually relying more on my doctors and less on Google (mostly because I don't need to be more worried than I already am).  What I do know is that at this point in my pregnancy, all the statistics are in my favor.  I know that I'm being closely monitored and there is what one of my doctors likes to call a "safety net" around my pregnancy this time.  I know that I'll have high-tech ultrasound and non-stress tests and kick counts and we'll do everything we can to make sure this baby is okay.  I'll take all the necessary precautions (and probably a lot of unnecessary precautions as well).

But I keep coming back to the same question:  When you don't know what went wrong the first time, how do you prevent it from happening again?

I'm seeing two doctors for this pregnancy.  My regular OB from last time, a very kind man who promised me that what happened last time won't happen again, and a maternal fetal medicine specialist who only takes high-risk patients (I know, I'm so special).  She's the only woman in her practice, and she manages to be both warm and nurturing and also sassy and no-nonsense.  I like and trust them both.  Since I have two doctors, I have an appointment about every two weeks.  Plus high tech ultrasounds (two so far, another scheduled for early February).  Later in my pregnancy, I'll go in for weekly and then bi-weekly non-stress tests and bio-physical profiles that will track the baby's heart rate and movements and measurements and mood swings (ok, not really, but that would be interesting).

Our last ultrasound looked good.  The doctor was encouraging and optimistic.  The Deuce was measuring right on target, growth appeared to be exactly perfect, body parts were proportional (and adorable), heart rate was strong and steady.

But guess what?  They said the same thing about Eliza at that stage.  And at 20 weeks.  And at 24 weeks.  So "good growth" only brings me so much comfort.

Eliza was declared perfect at every. single. doctor appointment and ultrasound that I had. But at 34 weeks and 3 days, I suddenly and rapidly went into labor.  By the time I got to the hospital (just two and a half hours after I first started having contractions), I was fully dilated and Eliza had no heartbeat.  An hour later she was born.  And NO ONE CAN EXPLAIN what happened.  Not from my blood tests ("normal"), not from autopsy results ("normal"), not from the placenta pathology report ("normal").  There is no clear explanation for why a healthy, PERFECT baby died.

So once again, I ask:  If you don't know what caused a baby's death, how do you prevent it from happening again?

My OB, bless his heart, the older gentlemen with the beard, is so soft spoken and gentle and kind.  But when we first discussed trying to get pregnant again, I asked him that question, and he actually hit his desk with his fist as he said, "This will NOT happen again."

So here is what you do when you have no answers:

You try to trust your doctors and their medical equipment.  You take a baby aspirin every day.  You take extra folic acid.  You take a lot of deep breaths.  You wonder many times a day if the baby is actually still alive.

And you freaking hope you get lucky this time.

Because there's really nothing you can do.

I mean, seriously, a BABY ASPIRIN?  You're telling me that's what stands between life and death for The Deuce?  A pill I can buy over the counter without a prescription, in fact I don't even have to be 18 to buy it!  A CHILD could buy this "lifesaving" drug!  A pill that is so small I could swallow it without water if I had to?  My doctor assures me that aspirin is actually a remarkable drug because it can cross the placenta and work for the baby as well as the mom.  I asked her why they don't give it to all pregnant women--do you know how crazy it makes me to imagine that a fucking baby aspirin a day could have saved Eliza?--and she acknowledged the validity of my question--and probably the fury behind it as well.  She said there are some risks involved with any blood thinner during pregnancy.  Along those same lines, she didn't recommend that I do Heparin or Lovenox injections--believe me, I asked--which was somewhat disappointing because, as it turns out, Fear of Dead Baby totally trumps Fear of Needles.  And OMG isn't there SOMETHING I can do besides take a FREAKING baby aspirin?

My doctors assure me that I should actually consider it to be a positive thing that I don't have a specific health issue, like a clotting factor or genetic abnormality that caused Eliza's death.  But I think that would at least give me something specific to TREAT, something to FIX.  I mean, give me something to work with here!  They think that my perfect health history means I'm likely to have a successful pregnancy this time, but to me, it just feels like there's something mysterious and medically undetectable that could kill this baby just like it killed Eliza.

If Eliza's heart stopped beating sometime between 34 weeks 1 day (I felt her move for sure on Saturday the 4th) and 34 weeks 3 days (on Monday, when she was born), then who is to say that The Deuce's heart won't suddenly stop beating at 16 weeks, or 20 weeks, or 36 weeks?

Statistics are supposed to be on my side.  The doctor who read my last ultrasound told me we have a 97% chance of bringing home this baby.  He said (and I quote), "Diapers are almost certainly in your future."  (Anybody else only hear the "almost" in that sentence?)  But I just know that he would have said the same thing if he'd seen Eliza's ultrasound at 14 weeks.  And that is what keeps tripping me up.

It all comes down to this:  We have lots of questions.  We have no answers.  And if The Deuce lives (and it's likely The Deuce will live, at least according to all the information we have right now), we'll probably never know why this baby was okay and Eliza was not.

Unlike baby aspirin, I have a hard time swallowing that.


  1. "When you don't know what went wrong the first time, how do you prevent it from happening again?"

    - Amen

  2. I have no answers (& sadly, nobody does). Just lots of (((hugs))), prayers & good wishes for you, David & The Deuce.

  3. My doctor was "pretty sure" it was a cord issue with Addison and we have chosen to believe that, but when it comes down to it, we will never know for sure. Even with something to "blame" something to "look for" I know that a cord accident (most likly) won't be the problem this time, but all the other things that are out there are just as scary if not more so...we know way too much now.

    A baby aspirin for you an early induction for me...may have given us different outcomes...may not have, but yes, those thoughts are very hard pills to swallow.

    This is freaking terrifing. Do you have a doppler? It's not the cure to worrying, but it has helped bring my crazy down just a bit.

  4. Though our losses were different I understand the anxiety of having no answers. Daily I wonder if we will make it passed milestones this time. Julius was perfect in every way & then he was gone. It's very hard to deal with not having anyone/thing to blame (besides ourselves). I know that it's hard to be hopeful everyday, but know that we are all out here thinking of you and Duece & praying for his/her safe arrival.

  5. Here, here, my petrified friend.

    I have the same issue. We PRESUME a flattened cord killed Andrew. But even doctors refuse to put that as the cause of death on our paperwork. It was the only "slightly abnormal" thing in the whole batch. Slightly doesn't reassure me that it won't happen again and it surely doesn't help knowing we have another one of those damn cords this go-around.

    I totally get this whole post. I am the planner, researcher and all those things as well. Elliot and I both are. That's why losing a child has been even harder than the obvious reasons-- because we were crossing every "t" and dotting every "i" and still, no answers definitive enough to create a preventative measure this time.

    This journey is long. I just hope be both (and our children) make it out alive. Nothing like feeling your uterus tragically kills of children. :/

  6. Our losses are different, and even so I worry about this same thing. If I don't know "for sure" how Jack contracted Ecoli/Meningitis, how do I ensure it won't happen again? We can take all these precautions, and then STILL lose again.

    I can not do this again.

    I think it helps to have multiple sets of eyes all over baby. It bring some comfort, but really it's the time between appointments where anxiety is at an all time high, and even so it can all change in a nanosecond. I hate that.

  7. In some ways, I feel fortunate that I had a definitive answer as to why Sam died. The cord wrapped around his neck tightly 3 times. That was it. The probability of happening again was very small (1:1,000,000) but we all know statistics don't mean much when you've been on the wrong side of them. But, I had an answer and for that, I was grateful, if that's the right word. Not knowing must be so hard.

    All I can say is do whatever you need to do to get through this pregnancy. I found a home doppler helped, but I know others have found them maddening. I used to also repeat the mantra "most babies live" a lot, which they do. They also knew me by first name at the L&D triage by the end of my pregnancy, but I didn't care - they told me to come whenever, so I did.

    This pregnancy is not nearly as nerve-wracking as the last. Most babies DO live and I'm so grateful I have proof at home.

    You can do this, Brooke. It sounds like you're in good hands and you are doing everything you can. It's a long journey ahead but I know you can do it.

  8. I have two possible causes for Hayes' death: cord accident bc of the septum (which I believe was the cause) and clotting issue bc of the disorder we discovered in me after his death. Even tho I have two issues and have "fixed" them both, I was still freaking out and constantly worried. Now, of course that I have a new issue that trumps both of those to worry about. But we all worry, reason or none.

  9. Hi Brooke. Congrats on baby Deuce. I'm so happy for you.

    Since we suspected my cerv' was the problem with Liam but didn't know for sure and it was possibly just pre-term labor (23 weeks...I too had contractions which is why IC was sometimes questioned as not the culprit), which there is little that can be done for, I got varying opinions about my third pregnancy (my daughter was born in Oct. and she is my only living child. I had an early miscarriage in Dec. 2010).

    Anyway, I hoped and prayed that my cervix wasn't the problem, because if it was, then I was dealing with the likelihood of preterm labor AND incompetent cervix. Then, at 17 weeks when my angel OB put in a preventative cerclage and definitively put me on bedrest because of the softness of my cervix, I was...I don't know, momentary relieved? because I knew what happened to my son? But also incredibly freaked out. I mean, 20 weeks of absolute bedrest? With no guarantees? Weekly ultrasounds and P17 injections but no one knows how much the P17 actually helps?

    It's so incredibly frustrating how, even with all of the amazing technology, that overall it feels like pregnancy and the uterus and the female body is a complete freakin' mystery. For me, I still feel like my two doctors just did everything they could do, threw everything (with any cause they could find) at me, and thankfully it worked.

    So, baby will will will work!
    (are they considering progesterone injections since you did go into labor pre-term?)

  10. I'm guessing that the only thing I could take comfort in (from an analytical standpoint) is the stats. Lighting rarely strikes twice in the same place. One day at a time, you can do this.

  11. Oh, I know.

    Even though we know "what" went wrong (mostly), they have no idea why. No family history, no underlying conditions, nothing. We have no idea why it went right with Lucas and wrong with Olivia. (And this is why I will be just as high risk forever.) It sucks.

    Last night in my A&P lab the teacher was talking about a condition with the liver that sometimes but rarely happens to healthy people and it kills them within a month usually and is not treatable. She made the comment, "I know sometimes people think we have it all figured out, but there is still so much about the human body and medicine that we don't know,." And I thought to myself, you don't even know the half of it, lady.

  12. P.S. You are not missing out on much with those lovenox injections! And the chewable orange flavored baby aspirin tastes like candy (tic tacs.)

  13. We are on the same timeframe. I am due June 30th.

    I think not knowing is the hardest part of all of this. We found out that Braedon had a knot in his cord after he was born but I still feel left with so many questions. They say it won't happen again but then it wasn't likely to happen the first time either.

    This is just a nail biting, pulling out hair journey we are on. It is scary that there is not a whole lot we can do but depend on our doctors and hope it all goes differently.

    Sending you peaceful thoughts. Hang in there, soon it will be time for some baby kicks and the anatomy scan.

  14. It is sooooo hard for me to accept "No Reason"....How does a perfectly healthy baby die? A piece of me is consoled by the fact that all things point to a healthy alive baby, but all things pointed to a healthy alive baby with Camille. The perinatologist I saw after Camille died said "There is a reason that she died, we just don't know what that reason is."
    It is so hard to just have faith in the process. I know odds are always on the side of healthy and alive, but hard to not question the odds when you've been on the bad side of them. The best you can do is breathe, and hope and stay healthy to give the best odds in check. My OB suggested smoking crack, it seems to work for some people. haha- yeah he is funny. Any way...Sending so much love your way.

  15. I understand completely. I wish I could say that a diagnosis helps ease the fear, anxiety and worry.. but it doesn't. Just know that through it all there are so many of us who understand how frustrating it is to have an unknown.. sending hugs.

  16. Yep, me too. Totally. We got a reason. Hope died of an infection. My waters had been broken for too long so the barrier to infection was gone. Too much time passed, an infection got in, they didn't get the baby out, and she died.
    However, I did NOT know my waters had broken, and initially, the hospital said they hadn't. So how was I to trust it wasn't going to happen again, as I clearly had no idea what I was looking for. And every time I had an appointment/scan and was reassured all was fine, all I could think of was being 40w 1d pregnant with Hope, in early labour, and being told the same thing - that all was fine. Three days later, she was dead.
    It is maddening, Brooke. Pregnancy after loss is most certainly the second hardest thing you'll ever do.
    I wish there was more I could do to help, but what I can do is listen and abide.

  17. I. hear. you. And the extra precautions for pregnancy #2 made me relieved, and MAD. This wasn't the baby who needed the NSTs starting at 32 weeks, the lovenox every day, the induction etc. I'm so glad he got the extra looks, but it was such a confusing time.

    And I worried that when he was born alive and healthy that it would somehow make her even more labeled as imperfect. See, look! This baby is healthy and normal. But so was Eliza, and so is the Deuce, and I am sending love to both!

  18. "But I think that would at least give me something specific to TREAT, something to FIX. I mean, give me something to work with here!" I couldn't agree with you more on this. I asked this question for a long time after Liam passsed and even now. I get that he had Spina Bifida and that I took extra folic acid this time around to hopefully prevent it, but why was he the first baby to die in a surgery that they have been performing for years. No answers, and I am like you and want answers. And statistics are so hard for me these days also when it comes to my baby. When you created a statistic, not even a 1-5% chance of something recurring is good enough. We need like a 150%.

  19. It's very hard and extremely frustrating. And while there are times in your life where it's maybe a little bit easier to try to accept the fact that there are no answers, when you're pregnant after a loss is *not* one of those times.

    I have no answers or comfort to offer, but I hear you, and I'm hoping hard for you, and I hate that you have to go through this.

  20. Our Doctor and nurses said Cale's death was a result of a nuchal cord entanglement and that his cord got compressed from being so wrapped around his body (neck specifically). So naturally I was terrified about the same thing happening. Finley was born with the cord around his neck and I have two thoughts. 1. Why Cale? Why was Finn spared? (Thank God he was of course, but still) and 2. if I hadn't had an early induction would the same thing have happened as I went into labor and his cord got tight enough to kill him as it did his brother?

    I know statistics don't mean much, but I'm certainly glad they are on your side.