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June 18, 2011

Miscarriage Sucks.

What To Say & Do.

My heart goes out to women who miscarry. The delight of a missed period, the pleasures of the fantasies we all spin about our future progeny, the online shopping.

Then, when it doesn’t work… devastation. Profound grief.

Grief that doesn’t get honored and ritualized like the grief of a lost relative or friend.

Instead we lie on our backs, in stirrups, at the OB/GYN office, with a horribly looking dildo slammed up the vagina, trying to assess the damage via ultrasound. Trying to keep track of WTF the obstetrician/gynecologist is droning on about with HCGs this and heart rate that, when one has the horrible foreboding feeling that something’s just not quite right.

Miscarriage. Sounds so damn Victorian era or Westward Expansion. Like I didn’t drive the buggy right. I was on my way OUT WEST with my covered wagon and I guess the ride was a little too bumpy….

Friends and family don’t know what to say.

“Oh, sorry to hear that. But you can try again,” they say brightly. “You’re so healthy… you’ll be such a good mom! You look so good though…”

Or my personal favorite,

“I’m sure it’s for the best!”

Whaaaat?

For whom is this best? Not me.

Then, to add insult to injury, there’s the rummaging around in your most sacred spot, the uterus. Seriously? Haven’t we made more progress in the past few decades? D&C? “Let’s let nature take it’s course.” Really?

Perhaps, if you’ve been through this, you’ve asked your OB/GYN the question on every woman’s mind: What Can I Do?! What did I do wrong? What can I do better?

And if you’ve been through this more than once: What are you thinking because something seems seriously wrong here? What’s Plan B? Plan A is definitely not working. Hello, OB, Dearie? Run some damn tests!

I am board-certified in everything that can go wrong with the female body. I was taught at Harvard Medical School that miscarriage affects 15-20% of pregnancies, how to empathize, and to order tests only when a woman has 3 or more miscarriages, which is entitled “Recurrent Pregnancy Loss,” by the stakeholding men of OB/GYN. OK, so 15-20% of women have one miscarriage. 5% have two. 1% have three.

But, let me tell you a secret I didn’t get taught at Harvard Med. I was taught to question the status quo and use my mind to question authority whenever it doesn’t make sense to me, I don’t give a damn about three or more.

If a woman comes to me after two miscarriages and is troubled, wants some help and data, why should I withhold that information from her? Because the chance of an abnormal test is significantly higher after three, not two losses? Screw that. I bought into that old-school dogma until I became pregnant myself. And had some vaginal bleeding. And cramping. And self-ultrasounded every possible minute (my poor fetuses were definitely over-exposed to sono waves). And followed my progesterone and HCG level (the hormone of pregnancy, produced by the ovary’s corpus luteum or little progesterone factory, which supports the fertilized egg as it evolves into an embryo) like a mother cub. Now I review the data and make up my own mind about what makes sense, with one part physician-scientist brain and one part mommy brain.

Reasons for miscarriage? Sometimes it’s a genetic problem – the embryo is not quite right genetically. Sometimes it’s hormonal – the corpus luteum is not making quite enough progesterone to support the early pregnancy. And you can check these things. Sometimes it’s autoimmune — that creepy idea that the immune system is attacking the poor fetus.

But, Wait. Is There A Double Standard?

Ask any woman with infertility, who has cashed in her 401K to pay for assisted reproductive technology. Is she getting her blood tested? You bet she is. Is she getting her progesterone checked and also taking extra progesterone to support her pregnancy in the first trimester? Probably, even though there is not absolutely conclusive data (that is, large, robust randomized trials) that it works.

Please explain to me: Why should only women with infertility who are paying the big bucks get access to this testing? And treatment? Is this another case of patriarchal medicine gone wrong? I don’t quite get it.

I’ve included for your benefit a few citations from the world-famous Cochrane Database for Systematic Review showing that progesterone and HCG in threatened miscarriage does not have sufficient evidence to support it (1, 2).

BUT.

Millions of women are getting treated with both progesterone and HCG to prevent miscarriage. Please help me reconcile these two worlds: the world of how we treat women with the money for Assisted Reproductive Technology (ART) and the rest of us.

More On What Not to Say

Please don’t ask a woman who has miscarried what she did wrong. It is amazing to me how women get undermined by this question. It starts with pregnancy and chases after us as women until we’re in the grave. Enough already.

Well-meaning friends and in-laws start lecturing about caffeine exposure and ask other inappropriate questions such as: Did you drink before you knew? Uh, yes, and women in Europe have been doing that for about 500 years without a problem. And the caffeine data is totally mixed so back off of my green tea. BTW, did you know green tea increases fertility? What about all that running you do?  Did your doctor say that was a good idea? Um, running is totally safe in pregnancy. We don’t lay in bed just because of pregnancy. Aren’t you grateful for the child(ren) you have? Give me a break! This isn’t a matter of gratitude. It’s a matter of biology.

Other Unwelcome Comments…

I know how you feel.

Actually, you don’t. You are very different from me.

At least you didn’t know your baby.

Well, you know what? That doesn’t make this experience any less painful.

Try Something Radical: Be Present With Her Suffering

Please just tolerate the not-knowing with your friend or relative with a miscarriage. Be silent in their moment of grief and confusion and despair. Don’t fi it. Don’t try to cure it. Just feel the powerlessness of it with her.

Bring her a meal. Hug her – it raises oxytocin which helps modulate stress hormones. Rub her feet. Take her for a pedicure. Make her feel connected and loved. Tell her you are there for her. Watch a movie with her. Ask her if you can run to the grocery store for her. Ask her if there’s anything that you can do that would help. If she looks at you blankly, do her dishes and laundry. Fill up the comment section with other good ideas!

One girlfriend of mine planted a camilia. With intensely deep red flowers. And it blooms every spring around the anniversary of her miscarriage. It helps her grieve, a visual cue that holds her pain, and connects her to her loss in a palpable, soothing way.

Plant a camilia.

And then, maybe, go with her to the OB/GYN office to see about some testing. When she’s ready. Things like a day-21 progesterone level in the blood, and a Thyroid Stimulating Hormone (TSH) test with a free T3 level. And autoimmune tests such as anti-phopholipid antibodies (APLA) and perhaps a chromosome test. And test for Celiac – it’s a common cause of miscarriage that most doctors don’t know about. And it’s present in 1% of the US population.

Please share your empathic ideas in the comments section.

References

1. Wahabi HA, Abed Althagafi NF, Elawad M, Al Zeidan RA.

Cochrane Database Syst Rev. 2011 Mar 16;(3):CD005943.

Progestogen for treating threatened miscarriage.

2. Devaseelan P, Fogarty PP, Regan L.

Cochrane Database Syst Rev. 2010 May 12;(5):CD007422.

Human chorionic gonadotrophin for threatened miscarriage.

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