Then an Angel Came

By Carol Gino, RN, MA
Amityville, N.Y

As nurses, we learn that tragedy and miracles sometimes travel together-as my own family discovered after the death of our precious baby.

Reprinted with permission from Nursing98, March 1998, http://www.springnet.com

In hidden chambers of our hearts, we stash all the terrifying secrets we believe will cause our annihilation. For most of us, a child's death is one of those secrets. From our child's first breath, our own breath either hesitates in fear or hands itself over in tentative trust and innocent hope. No wonder we cower in panic when faced with a baby's death.

When my baby grandson Greggy died of sudden infant death syndrome (SIDS), his parents and sister, Jessie-only 2 1/2 years old at the time-were devastated. His death left a hole in the tapestry of our family that we feel to this day.

About a year after Greggy's death, my daughter Teri and her husband, Gordon, had their third child, Ashley. This pregnancy had been trouble-free, and Ashley flourished.

When Ashley was 2 and Jessie 5, Teri became pregnant again. This time, however, things weren't destined to go so smoothly.

At 28 weeks' gestation, Teri's water broke and she was confined to bed. At 32 weeks, she went into labor and had an emergency cesarean section. The little girl's prematurity and weight-only 3 pounds 10 ounces-put her at risk, yet she seemed strong. Encouraged by the physician and his own intuition, Gordon was sure she'd be fine. But Teri wasn't buying it.

Threats and promises

Before we made technology our god, a baby's death didn't interrupt the order of the universe. When people lived close to nature, they saw baby birds that never flew, small fish that never swam. They accepted death as part of life. But modern medicine has changed all that.

Today, science and technology have filled us with illusion. They've made us feel that our bodies are immortal. The death of a child exposes our vulnerability.

Teri was terrified by the thought of losing another child. She stubbornly refused to see her unnamed baby for days after the delivery.

Ironically, I-the only nurse in the family-had been hospitalized for a minor procedure when Teri went into labor. So the baby was already a few days old when I went to visit her in the neonatal nursery for the first time.

On my way to the hospital, I tried to be hopeful. I knew the baby wouldn't take a bottle for a while because her sucking reflex wasn't well developed. I tried not to think about all that could be wrong. Teri would never survive another loss.

I knocked on the nursery door and introduced myself to the nurse. "Hi, I'm Carol, the Griswold baby's grandmother," I said. "I haven't seen her yet."

The nurse smiled. "I'm Elaine," she said. "The baby's doing well, but you'll have to wait a minute to see her. The doctor's with her now. We want to try taking her off the ventilator."

"Great," I said, smiling brightly. Inside, I was praying that nothing would go wrong while I was standing outside that door.

I began to pace up and down the long hall, looking through the nursery windows at the other preemies. They were a sorry lot, I had to admit. Most were surrounded by so much medical equipment that they looked like bionic babies. I knew Teri would be horrified if she came down to the nursery alone.

I heard Elaine call. "Come on in. She's off." I scrubbed up and got into the yellow paper isolation gown.

Making a deal

As soon as I entered the nursery, I began scouting for our baby. Then I saw her-a pink infant, her eyes covered with black patches, an oxygen tube coming out of her mouth, a monitor belt around her belly, electrodes covering her chest. I watched her chest going up and down evenly. She didn't look so very small to me.

As I twirled open the vents on the side of the incubator to touch her, I crooned, "Hey, baby, welcome to the world. I'm glad to see you."

Suddenly, her legs started to kick and her head shook. I watched her chest rise and fall in quick, short bursts. Without hearing a sound, without seeing her eyes, I knew she was crying.

"Shh, shh," I comforted, stroking her chest with my fingers. "It will be okay. This is only temporary. You're going to grow into a big girl, and everyone is going to love you." Soon her breathing eased.

"I love you," I said. "I'll be back to see you soon."

As I started to withdraw my hand from the incubator, the baby grabbed my finger-hard. My eyes filled. "I'll make you a deal, baby," I told her. "We'll be partners. Stay alive, and you'll live in love. I'll teach you everything I know. My grandmother touched my life but died. I'll live and stay with you."

When the baby let go of my finger, I knew the deal was sealed.

Doubts and fears

"Did you see her?" Teri asked when I entered her hospital room.

I bent down and kissed her forehead. "She looks great," I said. "She's off the ventilator. She's strong, Teri, and alert. She grabbed my finger and wouldn't let go.

Teri frowned. "That doesn't sound like the baby I saw in the picture Gordon took," she said, gesturing toward the bedside table.

I opened the top drawer and took out the picture. The baby looked the same to me. "She doesn't look so bad," I began.

"You've been a nurse too long," Teri snapped. "This baby doesn't look okay! She looks like hell!"

For several more days, no one could convince her to visit the baby. Finally, she relented and agreed to go with me. By then, she, Gordon, and Jessie had settled on a name for the child-Shari1yn, Shari for short.

Seeing different things

In the neonatal nursery, Elaine was pleased to see us. "Shari's doing well," she said. "She's taking another ounce every 2 hours."

"She's taking a bottle?" Teri asked.

"No, we're still tube-feeding her. But I'm sure her sucking and gag reflexes will kick in soon." Teri just looked at her.

Once we'd gowned, Elaine took us to Shari's incubator. The baby looked stronger than ever to me. But when I looked at Teri's face, I knew we were seeing different things.

"How long do these babies usually last?" Teri asked abruptly.

Elaine looked surprised. "Most of them will go home," she answered.

"My baby Greggy was 14 pounds and perfectly healthy when he died of SIDS, so how can you tell me this tiny baby will live?"

Elaine's voice was kind when she replied. "I can't guarantee it. All I can say is that most of these babies go home and most don't die of SIDS."

Teri sat down next to the incubator. I saw her eyes scan the jumping lines on the cardiac monitor, the twisted oxygen tubing extending from Shari's face, the dark patches covering her eyes. "How can I see my baby under all that stuff?"

"I can take her out for a few minutes," Elaine said. "Would you like to hold her?"

"Hold her?" Teri sounded frightened to death.

Elaine gently lifted Shari out and wrapped her in a blanket-tubes, leads, and all. When she placed the little bundle in Teri's arms, Teri was stiff with fear. Elaine watched her for a moment, then said, "I'll take some of this stuff off. Maybe you'll feel better if you can see her eyes."

Elaine knelt in front of Teri. "Here, hold this," she said to me, removing the oxygen tubing from Shari's face. "Just hold it close to her nose. I want her mother to see her without all the gadgets."

When Elaine removed the eye patches, Shari wouldn't open her eyes. But without a doubt, she was perfect. Porcelain skin, tiny nose, full lips-Shari was gorgeous.

Teri ran her fingers gently over the baby's forehead and nose. "Hi, Shari," she whispered.

Suddenly, Shari opened her eyes.

Teri was so startled, she almost dropped her. "Mom, look at her eyes. They're blue, crystal blue...." Just like Greggy's.

"Take her back," Teri told Elaine. "I have to go back. I feel sick." Teri was crying now. "I can't do this, Mom, I just can't."

Steady progress

But she could. Despite her fears, Teri visited again.. and again. After she was discharged home, she returned daily to nurture her baby daughter- and Shari responded with steady progress. Soon Teri was hugging and kissing and feeding her all day long.

In this period, Teri began to see her life in a whole new way. Visiting Shari in the hospital, she got to know other parents who frequented the pediatric unit. When she heard their stories, she knew some of them had children with cancer. Many of those parents would leave the hospital alone. It was then that she resolved to stop feeling sorry for herself.

One day, she stopped by my house to give me an update on the baby.

While we were having our usual cup of tea, she asked if I had scissors handy. She held out her arm to me and bent her hand at the wrist. I saw the cotton macramé bracelet that she'd put on as a physical reminder of Greggy right after he died. She'd sworn never to take it off until she began to heal and could trust life again. "Greggy's bracelet-I think it's time to take it off."

"Really?" I asked. "You're ready for that?"

Teri smiled. "Greggy is etched in my soul, Mom. I don't need it anymore. I want to be happy with what I've got, not focus on what I've lost."

Slipping my scissors under the macramé braid-now gray with age-I looked her in the eye. "Here goes," I said, wanting to make sure she was certain. She never flinched. The bracelet fell to the table. "Do you want to save it?" I asked.

Teri slipped it into her purse. "Maybe just a little while longer."

Link to the past

A short time later, Gordon took Jessie and Ashley to see the baby for the first time. Ashley was only 2 1/2', so for her, Shari was like a doll. But Jessie, who was older and remembered Greggy, saw something else.

The next time she visited me, she said, "Mama Carol, did you see Shari's eyes?"

"I did," I said, smiling.

Jessie put her hand over her mouth and giggled. Then she whispered, "Mama Carol, I know those eyes..."

Carol Gino is the author of the best-selling books The Nurse's Story and Rusty's Story. This story is an excerpt from her new book about life after loss, Then an Angel Came. Published by Kensington Books, it's available in bookstores (Order today!). Visit Carol's Web site at http://www.starwater.com.

The mystery of SIDS

Typically, infants who've died of sudden infant death syndrome (SIDS) weren't sickly, impoverished, abused, or neglected. Most were well cared for before and after birth and had parents who loved them.

What triggers SIDS remains a mystery, risk factors, which apply to all babies, include exposure to smoking, stomach sleeping, and bed sharing. But although these conditions appear to increase the risk of SIDS, they don't cause it.

Although SIDS parents aren't guilty of causing their children's deaths, they feel guilty-in part because we live in a society where technology fights death. Adding to their pain, publicity about abusive parents end suspicious infant deaths spotlights a tiny minority of cases and casts a cloud over the majority of SIDS families.

As nurses, we need to remember that the family of a SIDS baby is also victimized by this tragic phenomenon. Parents need enormous courage to face the unknown again and risk having another child. Siblings of the baby who died must endure family and societal stresses that children in other families don't.

To cut down on the prejudice that adds to their pain, we nurses must first "do no harm." That means treating a SIDS parent with the same compassion and understanding we extend to parents whose children died of a more understandable cause, such as cancer or an automobile accident.

A life is no small thing, no matter how short, and the death of a baby is no less painful than the death of an older child. All parents have big hopes and dreams for their children. That most SIDS parents continue to move forward with their lives in the face of this great mystery reminds us of the potential for courage and heroism in all of us.