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Here are all the things I didn’t know about stillbirth, until it happened to me

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Last year, when I was nine weeks pregnant, an email went out to our newsroom with awful news: A colleague of ours had delivered a daughter stillborn.

I was, of course, horrified. I knew her and had been following her pregnancy updates on Facebook. I cried at my desk more than once that day, and I had trouble sleeping that night, imagining her devastation. I donated as much as I could to a fund to support her family.

I also thought for a fleeting moment — and I am not proud of this — “Well, now that this has happened to her, it won’t happen to me. Stillbirth has to be so rare, there’s no way it could happen to two women at the same company.”

Six months later, it happened to me.

Dear tech companies: I don't want to see pregnancy ads after my child was stillborn

Only once I was at the hospital, devastated and waiting for the labor-inducing drugs to kick in, did I learn that in the United States, every 1 in 160 births is a stillbirth — not common, but certainly not as rare as I thought it was. I didn’t know there are 26,000 stillbirths in the United States every year. That you can have a completely normal pregnancy, and then suddenly everything can go wrong. That African American women are twice as likely to suffer a stillbirth as white women. That a lot of insurance companies won’t pay for fetal autopsies, because wanting to know why your baby died is considered “elective.” That in one-third to half of all cases, doctors never find a cause. And that hardly any research is being done to improve these dreadful statistics.

I didn’t know that Oct. 15 is Pregnancy and Infant Loss Remembrance Day. Or that October is Pregnancy and Infant Loss Awareness Month. I do now.

One of the things that makes me angriest is the lack of information. Minutes after we learned that our son had died, our doctor told us it appeared on the sonogram as though my placenta had become detached from my uterus, called placental abruption.

“One theory about the cause of a lot of placental abruptions is micro-clotting due to undiagnosed clotting disorders,” she said. “One of the most common clotting disorders is called Factor V Leiden.”

Months later, after every test under the sun had been performed, I found out I was positive for that exact disorder. I was apparently born with it, but had never been tested for it until then — not when I got on the pill in college, not when I became a flight attendant, not when I went to my doctor three months before my husband and I started trying to conceive “just to make sure everything looked good” — all times when I was entering a “hypercoagulable state” that I now know could have killed me.

So is that what killed my son? I have gotten second opinions galore, and all the experts can say is “maybe,” “probably,” “it’s a theory.” I have read every medical study about clotting disorders and stillbirth — easy to do because there are so few — and some are downright contradictory, the sample sizes so small. The most conclusive thing that can be said is that no other cause for my son’s death could be found.

In 2009, researchers in Norway found when pregnant women were trained to count and track fetal movements in the third trimester, the stillbirth rate decreased by nearly 50 percent. They presented these findings at a conference in Washington, D.C.

Sitting in the audience was a mom from Iowa, Tiffan Yamen, whose daughter was stillborn in 2004 after doctors had shrugged off decreased fetal movements.

Yamen teamed up with other bereaved mothers in Iowa to create the Count the Kicks program. Together, they contacted every maternal health-care provider in the state, offering free brochures about the importance of systematically counting fetal movements.

Within five years, the stillbirth rate in Iowa dropped by a whopping 28 percent. Although it hasn’t been proved the campaign is the reason for the drop, no other explanations have been identified.

The program is now moving to other states as funding allows. And now, there’s a Count the Kicks app.

Once my placenta abrupted, my son was dead within minutes; even a rush to the ER wouldn’t have saved him. But if the micro-clotting theory is correct, then the clots could have been developing for weeks, which may have slowed my son’s movements long before it was fatal. If I had been methodically tracking his movements, could I have noticed there was a problem sooner and saved his life? I will never know.

Nothing haunts me more than that fact. I will never know.

I want to be clear that I am not blaming myself or any other woman who has gone through this. I did the best I could with the information I had at the time. I do not recall ever being told about the importance of counting kicks.

Within a couple of weeks of coming home from the hospital, I was introduced to a world I never knew existed — women supporting other women who have gone through recurrent miscarriage, termination for medical reasons, stillbirth and infant loss. There’s a group at my local library. There’s a yoga therapy group. Our hospital had a memorial service for all the babies lost there that year. I just returned from a retreat in Rhode Island.

I am so grateful for these caring and resilient women — who have shown me that I will survive and I can go on — and so frustrated when we get new members every month walking in with the same question, “How could this have happened?”

My doctors are hopeful that with medication and monitoring I will be able to have a living child in the future. For now, I exist in an in-between world I call “mom purgatory.” I am a mom, but I have nothing to show for it, save the memories of carrying my child in my body, and the brief time when I got to hold his.

If you are pregnant and you are reading this, I don’t want to scare you, but I want you to have better information. I will be okay, but I would do anything to keep you from knowing this pain. If I am ever lucky enough to get to the third trimester again, I will be counting kicks. I hope you will be, too.

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More reading:

After losing two pregnancies in six months, how can I ever turn off my fear?

To help prevent stillbirths, counting fetal kicks may help

A shocking number of U.S. women still die of childbirth. California is doing something about that.

Fathers suffer from pregnancy loss and stillbirths, too

Stillbirth in the 21st century? Yes, it happens.