When death was beautiful
A patient death is never easy; my first one surely wasn't. But can a death be something other than sad and tragic? Can a death be...beautiful? This is the story of an amazing baby boy and how he changed my entire perspective on death.
When I helped admit Little Man on Friday, I had no idea that five days later I would be sitting by his bed praying he would hold on until his baptism that afternoon. Prenatal tests had indicated some possible genetic abnormalities and this was quickly obvious upon Little Man’s admission to the NICU. He had hydrocephalus, a small and asymmetrical chin, low-set ears, a webbed neck, clenched fists with overlapping fingers, and was unable to fully extend his arms. He was also having some respiratory distress so we quickly got him stabilized on NIPPV (CPAP with a respiratory rate) through a nasal cannula. A head ultrasound was performed that showed enlarged ventricles, which correlated with his large head size, but more tests would need to be performed before we truly knew the extent of his condition. I spent the rest of the weekend caring for Little Man and getting to know his parents, who were both in their early 40s. This was their first baby and they were so excited.
When I came back to work on Tuesday, I was shocked to hear that Little Man’s parents had decided to withdraw support. I learned that Little Man’s MRI the previous day had shown large ventricles without a surgical option and very little healthy white matter. He was also continuing to have difficulty breathing due to his underdeveloped lungs and enlarged heart, and he was close to needing intubation. Because of all of this, his parents decided that they would remove his respiratory support the next day. Since I had gotten to know him and his parents all weekend, I requested to care for him that day, even though I was scared. This was going to be my first experience with a patient death and I wasn’t sure if I was ready for it, but it felt like something I had to do.
The next day, Wednesday, represents one of those “defining moments” of my nursing career, even though I didn’t perform any crazy procedures, run a code, or save a life—I didn’t even give any medications! What I did do that day, though, was arts and crafts with a family who was about to lose their baby. We made prints of his clenched hands and his feet, I took pictures of him with his family, and I helped his parents get him dressed in clothes for the first time. My only real “job” that day, was to help him make it to his baptism that afternoon. When I had talked to the neonatologist that morning, she had said it would likely take Little Man hours or even more than a day to pass away since he wasn’t intubated at that point and was breathing mostly on his own (with support of the NIPPV). However, as the day progressed, I knew that it wouldn’t take him that long to die once we removed the respiratory support. He started having more and more episodes of bradycardia and oxygen desaturation as the day went on, but he would recover on his own each time. I kept slowly turning up his FiO2, hoping it would help until it was time for the baptism. His parents just wanted that one little thing—to have him baptized by their pastor—and I was determined to give them that.
I stood in the back of the room during the baptism, my eyes trained on his monitor. I kept the monitor paused using a remote so the alarms would not disturb the baptism, and I cranked up his FiO2, just hoping to get him through it. At one point during the baptism, his heart rate dropped severely and I had to give him a couple manual breaths on the ventilator that was providing the NIPPV. One of Little Man’s aunts, who was also a nurse, caught my eye, and it was obvious that we both knew he wasn’t going to last much longer. After the ceremony was complete, there were a couple family members who still had not held Little Man, so one by one, we got them settled into the chair with him. I stood out in the hallway carefully watching his monitor while Little Man’s family held him, entering the room only to transfer Little Man into the next family member’s arms. Less than an hour after the baptism, I was leaning against the wall across from Little Man’s room while the last family member was holding him. All of a sudden, his heart rate plummeted. His dad met me at the doorway to the room, and it was obvious that he knew—it was time. I quickly picked Little Man up and his mom sat down in the chair. I placed him in her arms, turned off the respiratory support, and carefully removed the nasal cannula from his face. Little Man passed away only minutes later. I knew at that moment that he gave his parents the best gift he could have. He didn’t make them have to decide when to remove support; he decided he was ready all on his own. This family didn’t want their little boy to suffer, and I think he didn’t want them to suffer either.
Little Man’s parents adopted a baby girl a few months later, and I know that they wouldn’t have been able to do this if they had still been trying to care for Little Man. My coworkers kept telling me that I would never forget my first patient death, and they’re right—but not just because he was my first. I will never forget Little Man because his death was something that I never though death could be—beautiful.
About RNtoNNP, BSN
NICU nurse and new neonatal nurse practitioner student
Joined Aug '15; Posts: 7; Likes: 33.Dec 15, '16Thank you for sharing this beautiful story.
This will remain a powerful memory the rest of your career. I still have vivid memories from many years ago when I was a newer nurse on pediatrics and experienced my first infant death.Dec 15, '16God bless you for taking care of not only Little Man but their family too. You are truly an amazing person because I could not handle that. This story brought tears to my eyes.Dec 16, '16Beautifully written. I also was involved with my first patient death within the last year. Also a NICU death where parents decided to withdraw support after all tests showed there was nothing more we could do. With the help of our amazing pain and palliative care team our patient also passed away peacefully. He had been with us for 6 months so it was amazingly difficult for all involved. It was the hardest thing I've experienced yet in my short career as a nurse but I'm glad I could help him and his wonderful family make his death as peaceful and loving as possible.Dec 17, '16This was such a beautiful story. I am living through some less beautiful death of a personal nature at the moment with related unpleasantness that just keeps on giving. This has colored my mood and life right into the holidays - your story was like a gift. It made me remember not all death is ugly, and not everyone behaves badly in it's wake. A great big thank you - from someone you'll never meet.Dec 18, '16I can never forget my first death in NICU, it was exposing, raw and heart wrenching. I knew that those moments will come but the first death was really the memorable. I remember the patient and the emotions ,it was a moment of empathy and realization. Its like everything has been done but its something that only God can control. Death is painful for the ones who are left behind but death is peaceful for the patient who suffered , survived and fought until the end.Dec 18, '16When I read the title to this content, I had already had a thought in my head. I was thinking no one wants to die and no one wants to lose someone. Even in the most peaceful deaths, death is never beautiful.
You proved me wrong. As may deaths as I have encountered in the past 20 years, I never felt the way I did as when I read this. I am not sure I would have held up as well as you. you were awesome to the patient and the family. Good luck in your career and pass it on to your new co-workers.Dec 18, '163ringnursing-I'm so sorry for what you are going through, especially right before the holidays. Death really can be an ugly thing and even when it's not, it's still incredibly hard to cope with. I'm glad that Little Man's story could help at least a little bit.
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