by Mankia Sharma, MD
Editor’s Note: I invited Manika to write this article because I wanted someone familiar with a neonatal intensive care unit to share their experiences with coping with the death of a tiny infant. Although they are professionals often appearing stoic in their duties, in reality, they, too, are touched by grief.
Please be advised that some bereaved parents may find this story upsetting.
Noise is a constant part of the neonatal intensive care unit (NICU). Monitors, alarms, cries, laughter. Sounds mark every new life that enters the unit, every breath its current residents take. My first days working in the NICU served to change my television-fueled idea of a peaceful, quiet place dedicated to healing. Instead, I found controlled chaos. Everyone appeared in constant motion, there was always something that needed to be done. When a patient was critically ill, the room was charged with energy, on its toes for anything that may happen. But I also learned that silence does invade the unit upon occasion.
The loudest sound made in the NICU is that of the silence that cloaks a unit when a baby dies. This happens more often than any NICU member wants to admit, because it is the most difficult to discuss. The drapes are pulled, giving what privacy can be offered; we do our best to shut out the normal sounds of the NICU. And surprisingly, the rest of the unit understands and acts in stride. Life in the unit stands still in an effort to add its condolences. The staff makes every effort to blend seamlessly into the scene. The nurses adjust instruments around as quietly as possible. Often the only sound heard is the scratches of the doctors’ pens signing page after page of the death certificate and paperwork. Even other families who pass by the room of a grieving family know that things are different; they too walk quickly, soundlessly, to assure themselves their babies still live. Everyone’s heart aches for the family ensconced in that silent room, hunched protectively over a tiny body.
The tears that are often not seen are those that belong to the NICU staff. The obstetrics team asks us, the “baby doctors,” to meet with an expectant family when a preterm delivery or the delivery of a baby with known congenital anomalies is imminent. During this meeting, I tell the families that the baby, or babies, will become a part of my family. And I truly feel that this becomes the case. Many times, the first thing the baby sees immediately after delivery is my face. I have wondered what those wide eyes must see—the smile, the tired eyes, the concerned brow. The scientist in me recognizes that a preterm baby sees little more than light and shadows. But it is in that instant that a bond forms between that new life and me. When it becomes certain that a baby will likely not survive, the loss is that of a family member. The pain is just as striking. And yet, we the NICU staff feel that we must be stoic, we must hide our tears from the “real” family—we are not flesh and blood. We are only the sweat and will.
The concept of nurses and doctors remaining detached from the grief of a family during a patient’s death has evolved significantly. Now, we are trained to express our emotions, that it will help our healing and help the family as well. This is much easier said than done. Someone must remain in control, someone must fill out paperwork and gather the baby’s belongings and make the necessary phone calls. Too often, I am that someone. I focus on the clock. When we take away the machines and IVs and allow the parents to hold an infant for the first time, my clock starts. What time did we disconnect the ventilator? When did the baptism occur? How long ago did I give the last dose of morphine? When should I check on the family? How long should I wait to listen to the baby for heart sounds? When should I find the baby’s stethoscope? When is it ok to pronounce time of death? On TV, and in real life, we hear the doctor say “time of death…” when a patient officially dies. To this day, I have not been able to utter those words. They seem too final. They give power beyond my capacity. I will only say the time; to the parents, and to me, that is enough. In my mind, I did not decide when the baby took his or her last breath. I only recognize that it had been taken.
After the family has had its time with the baby, I often find myself enveloped into hugs, as if I were a member of that family. The repeated words of appreciation humble me and I am always at a loss for what to say. To me, I have just taken their most precious gift. My job is to heal, and I stand before them, stealing a life. But the gratitude I see in the family’s eyes, behind the tears, behind the grief, helps my own loss. I am often asked what it’s like to “lose a patient.” The death of a baby in the NICU is much more than the loss of a patient. As a medical team, we pour our hearts into each baby. Many of my call nights have been spent at the bedside of a sick baby, pacing, waiting for any signs of improvement of his or her condition. The NICU is such a foreign place to most people. So many of our parents do not have any idea of what to do, how to handle this new environment. Equipment and machines that seem to be from a science fiction movie fill a bare-walled room. In the midst of tubes, wires, tape, bright lights and constant sound lies a baby. Parents have remarked that they had to search through a jungle of technology to find their child, that they let their eyes follow the ventilator tubes. The monitors erratic waves and sounds become the only signs of life to many families; even some of our ventilators take away the normal rise and fall of each breath. It is the threat of silence that keeps the medical team motivated.
I give my patients pep talks, reminding them that there are people who depend on them, whose happiness is tied to them. Sometimes, it is not enough and these babies’ battle-worn bodies fail their strong spirits. There is a plea hidden in the depths of their eyes and an apology as well. I felt that I had failed the first patient who died in my care. My mentor at that time explained to me that we do not decide who lives or dies, we give only our support and our care. We are merely protectors for our patients and guides for their families. I still pass these words onto my colleagues in the time of loss, and I promise each day to live up to them. Our enemy is not death in the NICU, it is the silence that accompanies it.
Now, I smile each day that I walk into a unit full of chaos, as it reassures life. I smile at the crying baby whose life we were not guaranteed just weeks ago. And I laugh when I find myself covered with pee or poop—I cannot help myself, it is a sign of life and of the inevitable in my job. Along with most nurses and doctors, I come to work each day ready to accept any challenge, be it medical or emotional. Often, we give healing to each other, and someone is always attempting to bring smiles and laughs. But none of us can forget. Our halls are filled with memories, the walls lined with pictures of former patients who have grown up and beat all the odds. For many of us, however, the walk down the halls is a reminder of the patients who had not survived in each of those rooms. I remember the name of each baby who has died in my care, every final heartbeat for which I listened. The silence of each adds to the voice that becomes a promise to always help, always care, and always remember.
About the Author: Dr. Manika Sharma graduated with a Bachelor of Science (Biology) degree in 2003 from the University of Tennessee (Martin) and her Doctor of Medicine degree from the University of Tennessee (Memphis) in 2008. She completed her Residency training in Pediatrics at the Eastern Virginia Medical School/Children’s Hospital of the King’s Daughters (Norfolk, VA) in June, 2011.
Manika is currently doing a Fellowship training in Neonatology at the Pittsburgh (PA) Medical Center/Children’s Hospital of Pittsburgh/Magee-Women’s Hospital. Simply stated, she is a pediatrician doing further training to become a neonatologist. It requires an additional three-year program (after her three years for residency) where she will split her time between clinical work in the neonatal intensive care unit and in a research lab. Dr. Sharma’s research project looks at Neuroblastoma, which is the most common cancer in newborn infants.
Writing has been a hobby of hers since childhood. Although it has taken a backseat to her medical career, it is something she hopes to pursue more in the future.