Monday, August 5, 2013

The Girl We Lost

There was a time, not too long ago, when I wouldn't have been able to read an opinion piece called End of Life, At Birth. The title alone would have kept me away. Too liable to scratch away at the scab that has finally begun to harden over my wound.

Written by Dr. April Dworetz, a neonatologist, the piece examines the moral quandary of sustaining life in very premature infants.

Earlier this year, I shared my children's birth stories, on their birthdays. But last month, I let my third child's birthday come and go. She was born July 8, 2009, though she never took a breath.

When my water broke at 22 weeks, 4 days, I knew it was very bad. I knew that where we were living, in the UK, newborns would not get any medical care before 24 weeks gestation. But I also knew that even if we crossed that shaky line, it wouldn't guarantee anything in terms of her health. Unlike the parents of 23-week baby "Miracle", described in Dworetz's piece, Josh and I are scientifically-minded and well-informed; we knew the many risks associated with extreme premature birth.

I knew that babies need amniotic fluid to grow, and that mine was going, fast, along with worrying bloody show. I knew that there was no way to stop the leak, nor to put substitute fluid back inside. But there was so much I didn't know. No one at the public hospital where I was admitted ever looked me in the eye and told me that I was going to lose my baby. I understand, completely, why Miracle's parents allowed their child to be resuscitated. The opposite choice is so shocking, it hardly registers.

Our baby was going to die? But we had just picked up a hand-me-down crib from a friend. Our daughters, ages 6 and 4, had attended the 20 week ultrasound, and were thrilled to learn they would have another sister.

I would have to birth the baby. For some reason, I thought the doctors could spare me from this; rescue me from the baby dying inside me. But day followed day, as my body depleted itself of amniotic fluid, but refrained from going into active labor. I've since learned that it can be hard for a woman's body to go into labor before the hormones are right and ripe. If I had been more comfortable with death, and if anyone had given me frank choices, I might have gone home and waited, however many days or weeks it might have taken, until my body was ready to give birth. But I was not comfortable with death, and no one said a thing.

Also, there was that unspeakable fear hanging over my thoughts: if she, by some unlikely "miracle" made it past 24 weeks, they might put her on machines; keep her alive. And, as Dr. Dworetz explores in detail, there were many reasons to question that course of action, for the affliction she might have experienced, and for our own.

I forbade my daughters from coming to see me; I didn't even speak to them on the phone. It was like a state of purgatory, in which I couldn't explain what was happening, so I chose not to try. After one ultrasound, in which I held my gaze away from the screen, terrified of seeing both the technician's face, and my baby's, I wanted it to be over. I knew that our baby did not have a future, and I felt like I was in hell. I couldn't continue to live until this was over.

I asked for, and was given, drugs to bring on active labor. I had to sign a piece of paper, as technically I was choosing to end the pregnancy. (If I had been in Texas, following the passage of recent laws, my desperate pleas to bring this suffering to an end would have been ignored.)

A neonatologist, the most compassionate and straight-talking caregiver I encountered in my five-day ordeal, told me what to expect. She said that it was possible that the baby would be alive when she was born, but that because her lungs were not fully developed, she would not live more than a few hours. She told me that either way, I could hold the baby.

I gave birth the regular way. Though she only weighed 1 lb. 8 oz., the birth was more painful than any of my three full-term births. There's a difference between pain and suffering, I learned recently in a childbirth educator course. All my births were painful, but with the others the pain was tempered by intention and joy and excitement. This birth was replete with suffering.

A nurse wrapped her in a blanket so only her ashen face was showing. She felt so light in my arms, like a tiny bundle of feathers. The nurse said, "she has your hair."

Though there was no religious obligation to have a funeral or sit shiva, our supportive rabbi helped to arrange a burial in a Jewish cemetery. Though there were family members who discouraged it, I insisted on attending. The day after I was discharged from the hospital, we drove to north London and watched as Leah Naomi was buried in an unmarked grave, full of babies, secrets, and loss.

I noticed that most people in my life didn't want to talk about the baby that had failed to live. Some people never ever mentioned it to me. It was like I had never been pregnant. For whatever reason, it was hard to talk about.

It's hard to write about, too. There was so much guilt, so much second-guessing, as I wondered what I must have done wrong; I felt like I had failed grandiosely as a mother. But that caring neonatologist in the hospital said one other comforting thing I'll never forget: she said that considering the innumerable things that can go awry in the process of growing a baby, the miracle is that they ever come out of the process well and fully-formed.

Dr. Dworetz's piece starts with Jackie Kennedy's loss, which I have thought about a lot: how publicly she was pregnant, and how publicly she was forced to mourn. Pregnancy, for most women, is a time of celebration and joy. What I didn't know, until after, is that loss is an ever-present part of the fragile life-giving process. I had entered the secret society in which women--some friends who had never before mentioned a word--shared stories of their own or their relatives' losses. I attended a support group, where I found out that babies die; not just mine.

As explored in another New York Times piece from this past weekend, trauma is an ever-present part of everyone's life, and our traumas are bound to us. They do not simply evaporate. This one will be with me, always.

1 comment:

  1. Thank you. It's so important that we talk about our losses.


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