Losing a Child After Birth

When their baby daughter was born at 23 weeks, these parents were faced with an unimaginable decision. Could they let her face a lifetime of crippling health problems, or should they let her go?

The Beginning

It was raining that Thanksgiving weekend, and as I looked out the window of our new house, I remember noticing the aspen trees. Stark and bare, their leaves littering the ground, they looked so desolate and sad -- a sharp contrast to life inside our home, where we had lots to celebrate. We'd just moved from California into a beautiful area of Spokane. My husband, Charlie, and I were excited about being back in the Northwest, where we both had grown up; my sons, John and Henry, were looking forward to a white Christmas; and I was 23 weeks pregnant with our third child -- a girl. The cheerlessness of the aspens didn't seem to match our mood at all. I wished that the previous homeowners had planted pines, so they would be green all year long.

That Sunday night, after we said our goodbyes to the last of a houseful of relatives, I read the boys a chapter of a Harry Potter book while they stretched out on either side of me, hands on my stomach, marveling at their sister's kicks. My back hurt after the weekend's festivities, and I had an upset stomach, so I decided to go to bed early. As I was getting ready, I was struck by wave after wave of nausea. I went into the bathroom and discovered I was bleeding. Not a great gush of blood -- nothing that soaked my clothes or pooled on the floor. That's what I'd envisioned when I'd heard about a friend of a friend who began bleeding and went into labor in her 27th week.

By the time Charlie and I arrived at the hospital, I could no longer pretend that my labor pains were just indigestion. As I fumbled into a gown, the night nurse asked me questions.

"How far along are you?"

"Almost 24 weeks."

"How sure of the dates are you?"

"Very."

"Do you use drugs, alcohol, or cigarettes?"

"No, no, no."

"Have you suffered any recent injuries?" She glanced at my husband. Maybe she was trying to decide whether he looked like a wife beater.

"I slipped and fell on the sidewalk three or four weeks ago."

She dismissed this. "Too long ago. Amniocentesis results?"

"Everything's normal."

"Do you know the sex of your baby?"

"It's a girl."

"Oh, how nice. Two boys and girl. I bet they'll spoil her rotten."

    Getting the News

    Charlie and I sort of half smiled. Maybe this wasn't such a big deal. The nurse exposed my bulging belly and tried the monitor in different spots, looking for the heartbeat. "You're so little," she said.

    I had spent the better part of the Thanksgiving holiday having people pat my stomach and tell me how big I was. To be told I was little somehow made me feel less pregnant. "I don't feel little," I replied.

    She found the baby's heart. One hundred and fifty beats per minute. Normal. Our little girl was just fine. As someone drew blood from my arm, an intern came in and calmly began explaining procedures to me. Some of what she said made sense, but much of it was white noise.

    "We're checking your blood for mumbledy-mmph. We're going to stop the contractions with an injection of ya-ya-ya-ya-ya. We're giving you blah-blah-blah for the baby's lungs, just in case. The lungs of a 23-week-old fetus are something or other. Could the date be off a little?"

    "No."

    "Because every week makes a big difference."

    "What happens after you stop the labor?" Charlie asked.

    "Mary stays here on bed rest until she delivers," the intern replied. "Hopefully in about 16 weeks."

    At the same time that her words hit my brain, a needle was plunged into my thigh, and a cold, stinging sensation spread throughout my body. How could I be in the hospital for 16 weeks? Henry needed help with his Star Student poster. John had a book report due. Sixteen weeks? That included Christmas.

    The room seemed freezing cold, and the drugs made my legs shake. The nurse brought in heated blankets. The monitor tracking my contractions started climbing again. The nurse asked, "Have there been any other concerns with this pregnancy?" She took my hand, watching the monitor line spike. "Okay, honey, now breathe. You just have to get through this one," she lied. Charlie answered her question. "No problems with the pregnancy. Except some incontinence this weekend." I had called the doctor, but he had said that it was nothing to worry about.

    The nurse shook her head, alarmed. She thought there might be amniotic fluid leaking and wanted a sample of it. Suddenly, the room seemed to be filled with a thousand people. Someone stuck another needle into my thigh. Someone said my contractions were getting stronger. Someone announced that my white-blood-cell count was "through the roof." Someone put an IV into my wrist. The intern leaned over me, with one hand on my shaking leg.

    "Are you sure of your dates?"

    "I'm sure."

    I looked up to see a man in surgical scrubs standing at the foot of my bed. He was trim and muscular and had a long ponytail. He was the neonatologist, specializing in the care of children born prematurely. The doctor briskly explained that my amniotic sac was leaking, that I probably had an intrauterine infection, and that my baby was going to be born in a few hours because the efforts to stop my labor were failing. He said that her chances of survival would be better at 25 weeks, and that at 23 weeks, they were less than 50 percent. But he explained that he would do everything possible to keep our daughter alive. There would be drugs, machines, tubes, and all manner of poking and prodding. Twenty-three weeks gestation might be earlier than most preemies in the neonatal intensive care unit, but he was prepared for the challenge. When Charlie asked, the doctor admitted that in his experience, most survivors have at least one serious developmental problem. He mentioned underdeveloped lungs, brain bleeds, cerebral palsy, mental retardation, blindness, and deafness.

      The Decision

      I had seen programs on television and read magazine articles about "miracle preemies." Those babies weighed just a pound or so, and saving them was a medical feat, but they survived, thanks to the heroic efforts of doctors like this one. I remembered several stories about babies whose parents came to the hospital every day for months. They sang to their babies, taped their photos inside the incubators, and touched their infants only with special gloves because preemie skin is so delicate. These babies lived and went home.

      Everything was happening so fast. I wanted to do all I could for my daughter, but did she really have a chance? I realized that Charlie and I had to make a choice. If we didn't, the doctors would just move forward. An anesthesiologist had just given me an epidural when Charlie insisted, "I need three minutes alone with my wife." Everyone left us alone.

      He examined the tiny incubator that had been wheeled into the room. "If they can clone a sheep, why can't they re-create an amniotic sac? Why can't they just put her in a little pool for 16 weeks?" he asked.

      "Do you think they can do anything for her?" I said.

      "They'll try a lot of procedures, but it probably won't help in the end."

      I thought about the soft blue checkerboard crib quilt waiting at home, wishing we had thought to bring it. "Everything they put her through will be painful and scary. I can't stand the idea that she'll endure all this pain, and then die in a few weeks or days."

      "Or hours. That will be her experience of the world."

      "I just want her to be held by us, and that's all," I told him.

      "Are you sure?" he asked. "Because we can't undo this, and we need to be comfortable with our decision."

      "I know. Are you comfortable?"

      He nodded.

      The sun began to rise, filling the room with pink light. We realized this was not a movie of the week. The television programs and articles I'd seen had never mentioned all the babies who had died or the ones who had gone home profoundly disabled. Our child's life meant too much to us. This was our daughter, not just a chance to prove the latest medical technology. Her life illustrated the fragile line between life's possibilities and its impossibilities.

      Isabel was born at seven in the morning. She had so little body fat that she resembled a wise old woman. Her heart rate was slow. Her lungs were too sticky to allow air into them. Charlie went to pick up John and Henry from school so that they could have a chance to meet their sister. No one did anything to Isabel that caused her pain or discomfort. Instead, she nestled in Charlie's arms, feeling his breathing and listening to his heartbeat, while hers slowed and then ceased. We gave her back to God.

      Isabel did not need years to be the person she was meant to be. She allowed us to love her as our daughter. We did our best to give her peace in return. Several months later, I got pregnant again and we were blessed to have another daughter, Caroline.

      The trees on the hill where we buried Isabel were as empty of leaves as the aspens in my yard. The rain of Thanksgiving had turned to snow, and a light dusting of white illuminated the intricate perfection of large branches supporting smaller branches -- and then graceful, even smaller branches generating the tiniest of twigs. Seeing the trees empty this way, I realized each one's beauty came from the inequality of its parts and their interconnectedness. Isabel was not a medical miracle. She was the tiny branch without whom our family would be incomplete.

        Copyright © 2003 Mary Douthitt. Reprinted with permission from the November 2003 issue of Parents magazine.