As the only pediatrician in house at a community hospital, I never know what challenges I will encounter during my hospitalist shift. Recently, I was awakened in my call room at 4:00 am for the imminent delivery of a fetus of 19 weeks’ gestation with strong heart tones.
A mother with a history of a previous fetal demise was again in preterm labor. Previous attempts to delay delivery failed, and she arrived 4 cm dilated. Delivery was imminent and the thriving fetus continued to have strong heart tones. Because of the emotional trauma from her previous experience, the mother did not want to see or hold her infant. There were no other family members in attendance. The mother wanted the infant immediately removed from her room. I was alerted about this impending newborn admission by the labor nurse.
As a mother of 4 healthy children, my eyes welled up receiving this call. I was heartbroken for this mother and child. As this infant’s physician, I was not sure how I would handle this. Because the gestational age was certain, this would not be a viable infant. A discussion of resuscitation versus comfort care was not warranted. However, I was unsure what to expect. How long would this infant live? Would it be born alive? Is there a protocol for this? We have a fetal demise protocol, but this infant was expected to be born alive. What documentation was required? Did I need a formal do-not-resuscitate consent signed? I contacted our nursing supervisor who offered support but was unable to provide additional guidance. Although our community hospital does not have a NICU, neonatology phone support was available. The neonatologist simply advised there was nothing to do for the infant, and the infant may not be born alive. I knew death was the certain outcome.
Cowardly, I hoped this would occur before delivery. An infant born alive needed a medical record and an admitting pediatrician. I sought advice on care while awaiting death, but at 4:00 am, I did not have any other options of people who were awake to call. I am not sure what I was looking for anyway. I already knew what to do. I knew to provide comfort. In retrospect, I think I just wanted someone to validate that this would be uncomfortable and difficult but necessary in the care of the patient.
We have an intermediate-level nursery (ILN) at our facility with capabilities like those of a level 2 NICU. The infant would go there. Our ILN nurse and I reviewed the policy on fetal and/or neonatal death. Specifically, any infant born with signs of life, including respiratory effort or heartbeat, regardless of gestational age, required an admission, medical record, and assignment of Apgar scores. Guidance on providing support for parents, offering pastoral care, funeral home arrangements, and mandatory notification of the local organ procurement agency was also included. Further down the policy, there was a line guiding what to do when an infant is born alive and the family does not want the infant to remain in the room. The policy advises assigning a caregiver to hold the infant.
Before I had any additional time to ponder this situation, the labor-and-delivery nurse walked into our ILN with a 285-g boy with a heart rate of ∼120 beats per minute. We placed him on the warmer. His Apgar scores were 2 at 1 minute and 2 at 5 minutes. All points were for the heart rate. On examination, we could see his heart beating regularly through his chest. His eyes were fused shut, and his skin was nearly translucent. He appeared comfortably asleep. His examination was consistent with his gestational age. We dried him and wrapped him in a blanket. Our charge nurse cradled him in her arms. When she was almost immediately called to attend to a different matter, I took the infant from her and held him until he died 2.5 hours later.
There are no instructions on how to spend 2.5 hours holding someone else’s infant while he dies. During that time, the boy appeared to make ∼5 to 7 weak, sporadic, and ineffective attempts at breaths. He reflexively withdrew his arm once when I touched his hand. He never appeared to suffer and never appeared uncomfortable. He looked perfectly formed, yet there was no chance for survival. Hanging on for >2 hours, he was a tough cookie. Not knowing what else to do, I said a brief prayer for his comfort and I prayed for his parents. After that, I just stared at this amazing infant with a persistent heartbeat. The experience was surreal. At a slight 285 g, I did not feel like I was holding an infant. At least he did not feel like any of the warm, squirmy infants I have held. During this time, I also thought about the medical record. All the mandatory clicks in the electronic medical record seemed irrelevant in this child. I questioned how or if I should bill for this encounter. This seemed particularly icky. Although I nearly cried at the idea of him before I met him, I did not cry after, and I did not cry when he died. I questioned whether I should feel any connection to the infant. I did not. I reflected how hoping he would not be born alive showed more concern for myself than my patient. Although I was nearing the end of my shift, I knew I would stay with him until he died, but I felt guilty about my lack of emotion. I worried this was a poor reflection of me as a mother and doctor. I was relieved that he never appeared to suffer. Perhaps I was more worried that if he suffered, I knew I would suffer, too.
Clinically, this did not challenge me. From a decision-making standpoint, it was an easy case. I knew he would die. I knew there was nothing I could do to prevent it. I wasn’t managing complicated electrolyte abnormalities or caring for a child in cardiogenic shock. I was not fearful of a cognitive error. I was fearful of what my response to the experience would say about me.
As pediatric hospitalists, providing care for children takes many forms in many different settings. Sometimes we are called to admit a child with hypoxia and pneumonia. Sometimes we are called to assist pediatric surgical subspecialists with complex-care patients. Sometimes we are performing quality-improvement projects. Sometimes we have something to offer patients, such as antibiotics or intravenous fluids. Sometimes we have nothing to offer but reassurance and education. Early that morning, I held an infant. I am glad I did. I hope it was enough.
Dr Conroy drafted the manuscript and approved the final manuscript as submitted.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.