Unlocking the Mystery of Miscarriage

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For those of us who have suffered through miscarriage, one of the most difficult aspects to emotional recovery and trying to find peace after enduring the grieving process is that we can be left in a constant search for Why.  Quite often miscarriage is simply unfair and unexplainable, leaving us with a dangerous mind game of blaming ourselves…

  • I had some decaf coffee.  How much caffeine is in a decaf coffee?  What was I thinking?
  • I ate gluten, wait maybe I should be eating gluten.
  • I ate some chocolate, OMG I need to cut back on sugar.  Ooh, is that a cupcake?  Damn, this is all my fault.
  • I got in a fight with my husband and got really stressed out.  We got in another fight and I was crying too much.  I stressed out my body, it’s my fault.
  • I had a rough week at work and I was totally exhausted.  It’s my fault because I didn’t put myself on bed rest for the first 6 weeks of pregnancy.
  • Maybe I exercised too much
  • I didn’t exercise enough
  • I didn’t get enough sleep
  • I’m sleeping too much
  • I’m overweight and my BMI is too high
  • I had an herbal tea.  Oh shit, what herbs were in that tea?
  • My fears and anxiety over pregnancy caused me to lose the baby
  • God is punishing me
  • I didn’t love the baby enough
  • I should have been eating flax seed crackers instead of graham crackers
  • My uterus is uninhabitable, or tilted, or shaped funny.  Wait, what size and shape is my uterus supposed to be?
  • Does my cervix know what it’s supposed to do?  Is it incompetent?  Is it confused?
  • Oh crap, was I drinking out of a water bottle that wasn’t BPA free?
  • I ate some meat that wasn’t organic and grass fed.

If you’ve been through this, you know that the list can go on and on.  No matter how many doctors tell you it’s not your fault, when left with no medical reasons, our devotion to the role of motherhood can cause us to carry blame for the sake of protecting and mothering the baby that we lost.

For quick reference, here’s a good read on the top reasons for miscarriage:

Reasons for Miscarriage

When I had my first miscarriage, I recall my OB/GYN saying that it was horribly bad luck.  It was like a lightning strike. (The first loss was due to a subchorionic hemorrhage at 15 weeks).  After my second loss, again it appeared to be bad luck.  I had become pregnant with identical twins following the transfer of one embryo.  It was perhaps the result of them competing against each other and I lost them around 9 weeks.  The third was twins again, following the transfer of two embryos.  I lost this pregnancy around 9 weeks and we were left with a mystery, confusion and hopelessness.  Testing was completed for all three losses and each one found to be genetically normal.  Is there something linking all three of these losses?  Something not yet detected?  Can it just be random bad luck three pregnancies in a row?  Or does each one have a different reason lingering behind the loss?

My husband and I were at a loss.  My OB/GYN was at a loss.  My fertility specialist was left speechless.  All of us shocked, hurt and not sure what to do next.  Following my third miscarriage, we were referred to a recurrent pregnancy loss specialist at Stanford Fertility and Reproductive Health.  What follows is a list of tests that I’ve been through following each miscarriage in case it is helpful to those of you in a similar situation.

Miscarriage 1:

Miscarriage 2:

No additional testing

Miscarriage 3:

  • Hysteroscopy
  • Comprehensive metabolic panel
  • C-reactive protein
  • Anti TPO Antibody
  • TSH (again)
  • Hemoglobin A1C
  • CBC
  • Antiphospholipid Antibody Expanded Panel (includes the following)-See link below for article on Antiphospholipid Syndrome (APS):
    • Lupus Anticoagulant
    • Anticardiolipin
    • AntiB2glycoprotein 1
    • Antiphosphatidyl ethanolamine
    • Antiphosphatidyl serine
    • Antiphosphatidic acid
    • Antiphosphatidyl glycerol
    • Antiphosphatidyl inositol

Out of all of these blood tests, did we find an answer?  Have we unlocked the mystery of my miscarriages?  Well, kind of, maybe…we have a clue but it could be inconclusive…but it’s a good enough clue to act on it.  The good news is that after all these tests, I know that I’m not diabetic, I don’t have an autoimmune disease, or thyroid problem and my uterus is in great shape!

While the results from these tests did not give a medical textbook answer, we did find a combination of things that could mean something and this came out of the Antiphospholipid Antibody Expanded Panel.  One of these (Antiphosphatidyl-inositol IgG) gave a result as “indeterminate” rather than negative.  You’ll notice in these lists of tests that there are several that relate to blood clotting factors.  During pregnancy, the blood thickens and changes in other ways that I won’t try to explain because I’m not an expert but this is all important in relation to blood supply to the placenta and survival of the fetus.  In my case, the combination of this indeterminate result with the timing of my miscarriages (15 weeks and 9 weeks) and the fact that all were genetically normal puts me in a possible diagnosis of Antiphospholipid Syndrome (APS).  While this is not exact evidence of APS, there is enough reason to believe that I could try to become pregnant again with the treatment of Heparin and baby aspirin daily during pregnancy.  For details on APS, check out this informative article

The investigative work is not yet quite over.  I’m still going to be meeting with a perinatal specialist to go over all of this as well, but I have a feeling we won’t get much more information than we have now.  From there, this big question will continue to linger…can I mentally, physically and emotionally hold up for another try?

 

Appendix:

Since I took the time to look up my tests, here’s a list of testing done for IVF and FETs:

Pre-IVF:

  • Prolactin
  • TSH (repeated approximately yearly)
  • FSH (day 3)
  • E2, Pre-Cycle (day 3)
  • Anti-Mullerian Hormone (AMH)
  • 17-alpha-Hydroxyprogesterone LCMS
  • FSH (day 3) repeated 2 months later
  • E2, Pre-Cycle (day 3) repeated 2 months later
  • Tested for various STDs
  • RPR/VDRL-Rapid Plasma Reagin, Qual
  • CBC (repeated throughout process of FET’s)
  • Blood typing, RH Type
  • Vitamin D (repeated throughout process of FET’s)
  • Cystic Fibrosis Profile
  • Anti-Mullerian Hormone (AMH) tested again

IVF cycle and FET cycles:

  • Follicular ultrasounds (repeated through cycle)
  • Estradiol (repeated through cycle)
  • Progesterone

Photo by CJE

3 thoughts on “Unlocking the Mystery of Miscarriage

  1. I’m so sorry to hear your losses. Your list of questions reads exactly how I thought about mine, you’re so right.

    I don’t know what tests are available near to you, but have you considered looking into reproductive immunology testing at all? I’ve had five losses – all between 6-10weeks – and I was tested for natural killer cells and given a pretty gruelling course of treatment (humira, Intralipids, steroids, metformin, hydroxychloroquine) and all of this helped me to have a beautiful baby son. It might be worth looking into, I so hope that you find what works for you xx

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