To have and to hold

By Norene Casas

When Valerie Taylor became pregnant with her first child in 1976, she was overjoyed, filled with love and hope for her future as a newlywed and a soon-to-be mother of a baby girl.

“All I ever wanted to do was be a mommy,” Valerie said.

Then, six-and-a-half months into the pregnancy, she began experiencing severe abdominal cramping. She waited for what felt like hours for the doctor in the hospital’s overcrowded waiting room. A nurse noticed Valerie hunched over, cradling her belly in fear and pain, and moved her to a delivery room. The next thing she remembers is waking up the following day, asking to see her baby. “I’ll get your doctor,” the nurse responded gravely.

No one would talk about her baby’s death. Valerie and her husband, Roger, suffered and mourned their daughter, whom they named Melody Jewel, alone. They even changed churches, as parishioners began to avoid them over fears of how to address the couple’s loss.

At a follow-up visit a few weeks later, a nurse, unaware that Valerie’s baby had died, asked about her daughter.

“I got so excited that somebody was asking me about my baby. Nobody had done that,” Valerie said. But after she told the nurse of her daughter’s death, the nurse “didn’t say another word and walked out of the room, and I just stood there thinking, ‘She really didn’t care. Nobody cares. Nobody knows.’”

A few years later, Valerie became pregnant with a boy. At seven months, she felt the same abdominal pain that led to her daughter’s early birth and death. This time, Valerie knew what was going on, and what was going to happen to her baby. And once again, she felt terrified and alone without any support from the hospital staff.

As his heart rate began to drop from 90 to 60, the nurse came into the room to remove the monitor.

“In my head, I just kept saying, ‘Oh, please let me hear, that’s all I am ever going to hear of my baby.’”

They named him David. This time, after he died, she asked the nurse to hold him, and only reluctantly did the nurse comply. Then Valerie asked the doctor to let her husband in the delivery room so he could also see their son.

“I have no pictures. I have nothing,” Valerie said.

Lessons in loss

When a child dies at birth, nothing is routine. Tests and medical procedures suddenly stop. Instead of the wailing of a newborn, there is silence. Years ago, this was also where the patient’s care ended. Today, nurses are realizing this is a critical moment when the standard of care should strengthen. This is the beginning of the family’s journey to healing, and as health care providers, nurses are a vital component in that journey.

“It is an honor and privilege to be in a patient’s life,” said Laura Sisk, D.N.P., clinical assistant professor in the School of Nursing. “We have that important responsibility of making that situation as bearable as possible for them.”

Valerie would later have three more children, two girls and a boy. All were carried to full term and are now adults with their own children, and Valerie is a grandmother of six. But she’ll never forget the two children who came before, and she shares her experiences of losing those babies with nurses and nursing students to help them understand their role in providing compassionate care.

“The color of my world changed,” Valerie told the students. “It will never be the same.” She explained how meaningful it would have been if a nurse would have taken the time to go into her room and talk to her about her child. “Just going in and even saying I am so sorry that your baby

died. Asking ‘Did you name your baby?’ Talking about the baby to the mom. I know that moms would love to hear that you are acknowledging they had a child. I don’t think I got that.”

One of Valerie’s daughters, Angela, also joins her in the presentations. She, too, has her own story of loss. It was March 5, 2003, when her son, Christian, was born four months early. He was only 1 pound, 4 ounces.

Angela remembers looking at Christian in the neonatal intensive care unit, longing to be closer to him.

“He needed me to hold him and cradle him. He needed to feel warmth, but so much more than he needed those things, I needed to do them,” she recently told the nursing students. “I needed to see him dressed and cradled; I needed to love him.”

She would spend the next days and nights walking to and from her son’s bedside. One night, she broke down. A nurse saw Angela crying and quickly rushed to her side. She sat her in a chair, squeezed her hand and asked Angela for her son’s name. She told Angela she would check on him to make sure he was still OK.

The nurse came back with small heart-shaped plaster ornaments of Christian’s hands and feet tied at the top with a light blue ribbon.

“She was making me a precious gift, a part of my son that I would have forever,” Angela said.

Four days after Christian was born, it was time for Angela to say goodbye. The nurses provided Angela a room for privacy, a safe place to hold him without tubes and wires, a dress, booties for his feet, and a bonnet. Together, Angela, Valerie and Valerie’s husband held Christian and took photos of him.

“This picture,” Valerie said, displaying a picture of her husband holding baby Christian gently up to his cheek. “That’s what we wanted to do with our children. We just wanted to hold them and love them, and we weren’t allowed to.”

Valerie struggled with wanting to hold her grandson and supporting her daughter.

“I had to wait until she was finished holding him. That was hard for me, but I knew she needed to do it and get through it,” she said.

Valerie was not allowed to dress either of her children for burial. But Angela had a different experience, one she shared with her mom. In the hospital room, Angela asked her mom to dress Christian.

“She allowed me to dress him,” Valerie said. “It was very healing for me because I wanted so much for my babies to be in a beautiful little dress.

“When we were together holding Christian, we were not only holding our grandson. We were also going back 30 years. We were grieving our children through Christian.”

Building memories

Although patient care has come a long way since Valerie’s experiences, Dr. Sisk believes there is still more to do to prepare students. To help, the school has supplemented the core nursing curriculum with a program dedicated to perinatal loss to teach them how to become compassionate healers. Students hear firsthand from mothers like Valerie and Angela who lost a child, and are reminded of how critical their role as nurses will be at these moments.

“I had to do a better job at getting them ready to take care of these families. I needed to do a better job for the families because they deserve compassionate healers,” said Dr. Sisk.

The perinatal loss program, offered a week before clinical rotations in obstetrics and gynecology, teaches students how to communicate with families who have lost a child. The school’s simulation lab is a safe learning setting where students can practice speaking with a mother about her child and offering the support she will need. Here, with actors and simulation mannequins, students learn to listen to their patients, as each person experiences and copes with loss differently.

The program teaches the students to create memory boxes and plaster footprint ornaments as keepsakes, much like the nurse who made the plaster ornaments for Angela. Some students paint the boxes in a light blue color; others paint a small heart or angel on the lid with flowers around the edges. In one class, a student shared the memory box she received after her own daughter died. The box carried a card from the nurses, a tiny bracelet with her daughter’s name spelled out with beads, and a heart-shaped ornament of her daughter’s footprints.

“Parents have very empty arms when they leave the hospital, so having the memory box with the footprints or a baby bracelet—those are tangible things they can hold onto,” said Dr. Sisk. “Perinatal loss isn’t like any other loss. They haven’t had a lifetime of making memories, so we need to create those memories for the families.”

The memory boxes created in the class are donated to local hospitals.

Such gestures “help keep the memory of the child they have lost alive,” said nursing student Mili Petrozzi. Hearing the stories told by Valerie and Angela and learning about the unique nature of perinatal loss “gives us more of a foundation to help support these moms through such a tragic loss.”

As the students prepared for clinical rotations, Angela expressed her gratitude to the neonatal intensive care unit nurse who showed such compassion the night she lost her baby in 2003, and to the future nurses for the comfort and healing they will someday offer to others like her.

“The earthly tangible things you give mothers like me are so important and special,” she said. “I had a baby, and you made my memories of him real. I am a mother and you helped me feel like one.”