BY FRANCES MCCARTHY, MS, RNC-NIC,CPLC

Many years ago, as a new nurse on a medical-surgical unit, I was caring for a woman with a terminal brain tumor. At the beginning of my shift, she told me frankly, “You know, I have a brain tumor!”  “Yes.” I replied, “I was told by the nurse from the evening shift. I will be taking care of you tonight.”  “Okay” was her response and those were the last words she spoke to me. Her temperature began to rise, and she became unresponsive. Before my preceptor and I could place her on a cooling device, she died. She was DNR. After we had done postmortem care my preceptor and I stepped into the nursing station. “Well, I hope this isn’t an indication of how your career is going to go.” she said with a small grin. Never could I have known then that that is exactly where my career would go.

From the med-surg unit, I transferred to the Neonatal Intensive Care Unit (NICU). For most of my career, I was a bedside NICU nurse. The NICU offered the opportunity to spend many days and hours helping parents become comfortable caring for their fragile infants. I was drawn to babies with complicated diagnoses. It was these families who became my mentors in how to love fiercely and defiantly in the face of uncertain outcomes. As I watched families learn how to care for their babies with feeding tubes, on oxygen or who needed specialized treatments, I was schooled about the depth of connection we need and want as human beings.

In 2015, I became one of the first nurse clinical coordinators in a perinatal palliative care program. Our work is almost exclusively with women who are pregnant with babies that have a life-limiting diagnosis.  For some of these families, the life of their babies will end before birth, for others, their babies may not survive the birth process, for even more families, their babies may only live minutes or hours, and for a small number of families, their babies may live for months or even years. For all these families, a time that is often filled with happy anticipation has become a time of uncertainty, fear, and grief. It is in this time of turmoil that I have been witness to fierce love and incredible courage. In our work, we are given the opportunity to accompany them, to bear witness to their experience and to find ways to honor their pregnancies and babies. We try to normalize the pregnancy and birth experience as much as possible but also to give space to their darkest thoughts and fears. Our goal is to create a safe space that allows for open communication, respect, and dignity. Perinatal loss is one that touches women fundamentally. It is a loss that may call into question their ability to carry life within them. They often feel responsible and guilt-ridden that it must have been something they did or did not do that caused their loss. We must help them release this guilt.

As with most types of death, perinatal loss is not spoken about openly.  It goes against our expectations. Parents should not have to bury their children. And yet, it is a painful truth for thousands of families every year. So, what are health professionals to do? We need to stand in the discomfort of the pain of these losses. Our discomfort can never be worse than the pain they are experiencing. We must tend to their needs, desires, and challenges as we walk with them for part of this journey. We cannot take away their pain, but we can recognize it, accept it, and help them to process it. We must not abandon them.

Several years ago, I had the privilege of meeting and caring for a family of three awaiting the birth of twin boys.  One twin was healthy, but the other twin had a complex cardiac condition. They had spoken with the pediatric cardiac surgeon who explained that only palliative surgery could be offered, and it would involve at least three surgeries and the possibility of a heart transplant.  In our consult with them, we described our approach to the care of babies with a life-limiting diagnosis.  After a lengthy discussion, the parents chose comfort care for their son. Our program’s goal is to follow the baby’s natural life, providing comfort, bonding, warmth and feeding when possible.  We encouraged the family to plan the birth and to prioritize their wishes and hopes for their experience with their babies. They wanted a vaginal birth, if possible, time alone with the boys and then to be discharged as quickly as was safe so that they could spend time with their family at home. Coordination among Neonatology, Maternal Fetal Medicine, Cardiology and Nursing helped to make a 23 hour discharge a reality.  The family spent most days in the nearby botanical gardens with the boys wrapped around mom’s body and their two-year-old brother kissing and smiling at them, while dad held him up to reach them. They had nine amazing days together.

While the loss of their son was excruciating, they honored his memory with a tree planted in the botanical garden and to live a life of love, laughter, and remembrance with their children and family. They went on after their loss to welcome another boy and then a girl! They speak of their son often and openly.  I am still in contact with them and marvel at the abundance of love they exude. I am so honored to know them and be connected to them.

I am so grateful to be a part of this work. It is a privilege to be invited into their lives, to honor their babies and weep with them. My hope is that the families we serve are a little less scared, a little more empowered and a lot less alone than they would have been without us. As we care for our families and babies, I continue to be in awe of the human spirit, its resilience, and in its desire to love.

Frances is a 2023 Ilene Beal Courageous Provider Award recipient.