August 30, 2015

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There’s been a bittersweet outpouring of stories about miscarriage in the past month or so since Mark Zuckerberg and Priscilla Chan opened up about having recurrent miscarriages before their current pregnancy. They are rightly considered courageous for talking about it so publicly and facilitating discussion about something so many people have suffered through alone. I’ve found myself wondering though, if we’ll hear any more about their journey in the future. After all the happy pink or blue and, “Like Baby Z-C’s page!” will there be any discussion about miscarriage not just ending when the new baby is born?

What about after the baby after the miscarriage, or worse, miscarriages? After the dimmed lights of the hushed ultrasound room are turned back on? After the anguishing, seemingly unrelenting blood or the disorienting D&C? After the weeks of hormonal upheaval during the body’s realization its uterus is empty again? After that little pair of booties is sadly tucked away in the back of a drawer? After doing something to commemorate the little life, and dreams, that were lost, or stuffing those dreams deep down inside in order to get through the days? After the initial stages of grief when a couple thinks they might be strong enough to try again?  

And what about after it all happens again? And again? And again?  

What about after the battery of tests that find no reason, or after they do? What about after the successive interventions—maybe a lifestyle change or a hormonal supplement or blood thinner? Maybe a corrective surgery, maybe IUI (intra-uterine insemination), or maybe, finally, the mother of all fertility treatment (infertility being a misnomer (at best), but that’s another discussion), IVF (in vitro fertilization).

And if landing at IVF, what about after all the drugs—the shots, the pills, the patches, the suppositories—after all the blood work and ultrasounds, after all the legs in stirrups, after the whacking off in a closet sized room stocked with porn, after all the waiting, the interminable, unbearable waiting, to find out how many embryos are retrieved, how many fertilize, how many are viable for transfer, and if there is—please god, please god, please—a positive pregnancy test? What about after a negative beta test then, or a miscarriage of an IVF pregnancy? What about after using donor sperm or eggs or a gestational carrier, and what about a miscarriage after that? What about after having to birth a still baby? What about after a decision to adopt, and after there is suddenly a baby available and then just as suddenly there isn’t? What about after a couple has spent every last part of themselves and decide to live child-free? What about the endless stream of insensitive and ignorant comments, the strained relationships and devastated finances?   

What about after being lucky enough to finally make it through a pregnancy? What about after all those weeks and months of stark terror waiting for the other shoe to drop yet again? What about after all those prenatal visits where everyone says not to worry and don’t understand why you both live for and dread Doppler checks and ultrasounds?  

What about after the ecstasy of taking a baby home at last only to discover that miscarriage doesn’t end there? Because every parent worries about their newborn, but not every parent has already known the recurrent trauma and chronic grief of the worst of those worries coming to fruition at so many stages.  

Surely, there are those who seem to adjust, heal, and are not tormented long term by their experience. But there is another group that is changed forever, that despite being overjoyed with their hard won baby, continues to struggle, and no one talks about us. We have a child(ren) now, so we must be fine.

I am not fine.

Like Priscilla Chan, I had three miscarriages. I now have two amazing children, 9 and 3. But there is so much more to the story, I was driven to write a book about it titled What Didn’t Kill Me.

I am happy. I have a good, full life with lots of love and laughter, and motherhood is every bit the dream I thought it would be. But I also have PTSD (Post Traumatic Stress Disorder). I am much better than I was right after I had my babies, but my improvement has taken three years since the birth of my second and a long-resisted prescription.

PTSD symptoms are generally grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, or changes in emotional reactions. Each of these may manifest in various ways, for example, avoidance behaviors may include finding a route to work that bypasses the diagnostic center where there was an ultrasound without a heartbeat; changes in thinking and mood may include angry outbursts or sleep disturbance.

Personally, I have sometimes felt like a walking check list.

Severe emotional distress or physical reactions to something that reminds you of the event: I could not bear to look at an ultrasound after my very first miscarriage, and I probably had 100 of them by the time I was done having my babies. I still cannot share in my family or friends’ excitement when they attempt to show me theirs.

Avoiding places, activities or people that remind you of the traumatic event: After my second baby, I switched doctors and vowed never to return to the building that housed more pain and emotion I ever knew was possible in one lifetime.

Difficulty concentrating: I’ve mailed bills with no checks in them and put orange juice in the pantry and trash in the refrigerator.

Irritability: Oh. My. God.

I could go on, but what finally led me to medication were the intrusive thoughts. I saw the death of my children all day, every day. Some of them were the obvious ones, that I’d find them not breathing as a baby, or Columbine type visuals as I reluctantly saw my son off to school each day. But there was nothing too trivial to torment me. My son’s sore leg after a slide into second base became Ewing’s Sarcoma, and I would see him dying in my arms at a Children’s Hospital. Waiting our turn at the ice cream truck I’d see my daughter slip under the wheels and be crushed. When we moved into our two story house I’d see them both at the bottom of the stairs, broken, bleeding, dead. All. The. Time. I rarely talked to anyone about what was happening. Not only did I feel fucking crazy, I was embarrassed, like I wasn’t worthy of post traumatic stress. After all, I had my babies. Get over it.

I had gone to therapy at various times during my reproductive struggle and did ultimately find two therapists who helped me through. But PTSD was never specifically diagnosed and they were each an hour away; there was—is—no one in my area who dealt with reproductive loss. Several kindly told me they would treat me in terms of generalized anxiety. One said we could look at my family and childhood history to discover why I reacted the way I have to my trauma. I wanted to scream, “Because it was traumatic!” and basically gave up the search. I’d be OK in time.

Three years later, I finally cried Uncle and started on Zoloft initially prescribed by my new gynecologist, a nurse practitioner. To navigate a side effect and dosage change, she referred me to a psychiatric nurse practitioner, who after speaking with me for five minutes said, “You have PTSD.” I wept with relief.

The Zoloft has unquestionably helped; the intrusive thoughts are less frequent—a couple of times a day, and less intense—which in turn has helped enormously with the irritability (or maybe that’s the Zoloft directly), and I’m so grateful for that. I’m still not what I would consider fine. I am a master at coping, but for me fine would be that I wouldn’t have to cope so fucking much to begin with.

But why the difficulty finding someone who works with reproductive trauma? Why are we not worthy of more accessible specialized care? Where is the discussion about after the miscarriages?

There is more to Priscilla Chan’s story too. We don’t know how she and Mark Zuckerberg got from where they started to where they are now; there are any number of treacherous pathways and painful detours on the road of trying to have a baby. What we are seeing is the hopeful exuberance of a couple close to finally being on the other side of that road, and that’s how it should be for now. I truly hope there is smoother paving ahead for them. But if there isn’t, I hope they talk about that too.

LP