I created this blog about a month ago, but I have delayed posting my first blog. At first I thought I would blog about Bronchopulmonary Dysplasia. I researched the topic for weeks, taking over 20 pages of notes. However, every time I went to write the post, it just didn’t feel like the right way to start off this blog. I looked over a long list of common conditions that we see often in the NICU, but again, nothing felt quite right. What a way to start off… darn writer’s block! After weeks of searching, I finally thought of the perfect way to start off this blog that is so important to me. A little over a year ago, I was interning in the NICU in a hospital in India. While I saw many different cases, one little baby changed my life, and I couldn’t be more grateful. Instead of a scientific, evidence based post, this one is personal. This is an excerpt from the journal that I kept while I was interning in a NICU in India, where I encountered a very rare case of Harlequin Ichthyosis. My next post will explore the etiology, causes, pathophysiology, and treatment of this condition, but this first post is taken directly from my personal journal, so that you can understand why I am so passionate about researching neonatal conditions. I hope that you enjoy, and thanks for reading!

“Every week, I shadow in the NICU at a major hospital in India. This hospital is one of the best in the region, so parents bring their sick infants from far away to seek treatment. The NICU has about 25 beds. Also included in my wing is a septic NICU with 5 beds, and a step-down unit with about 20 beds.  I typically spend about 15 hours/week in the NICU, observing the nurses, going on rounds with the doctors, watching deliveries that necessitate having NICU staff present, and both routine and emergency neonatal care. I’ve learned a lot, seen a lot, and have even been able to help out a bit, depending on the case. I’ve seen preterm babies, severe RDS, CCAM, diaphragmatic hernia, meningomylocelle, hydrocephaly, infantile seizures, meconium aspiration syndrome, meningitis, albinism, pulmonary hemorrhage, and persistent pulmonary hypertension of the newborn (PPHN), just to name a few. I’ve learned more about neonatal conditions in the past month than I’ve learned in my entire nursing career, which is wonderful. Overall my experience in the NICU has been a wonderful one. There’s only one case that darkens that memory, and several months later, I’m still thinking about it almost on a daily basis.

When nursing students first start their schooling, many of the older nurses laugh about how optimistic they are. Many nursing students think that they’ll be the superhero nurses who save all of their patients, and make countless lives better by their amazing nursing skills. While  nurses certainly have the power to save many lives and better their patient’s days, there’s another side to nursing. Every nurse, even the very best nurse in the entire world, will encounter death. Many nursing students are scared of having their first patient die, or are just unsure of what to expect. I actually have a slightly different experience. My very first job was as a home hospice aid, which was essentially helping an elderly lady with terminal cancer to maintain as much independence as possible as her body began to shut down. I entered into the job knowing that my patient would die, and through that job I was able to feel more comfortable with the idea of death. Knowing that every shift there was a possibility of my patient dying caused me to really look at my own self concepts of death, and that helped me to become more ok with the idea of death.

While death at all ages is hard, pediatric and neonatal deaths tend to be particularly difficult because the infant or child hasn’t lived a full life. You want to do everything that you can to save them, but when everything fails, sometimes there’s nothing that you can do but help support the patient and the family through the course of the disease. I want with all my heart to be a NICU superhero, but I know that sometimes, there will be a baby that is just born too early to survive, or there will be a baby that is too sick to make it. It’s hard, to come to terms with the death of your baby patient, but you learn that it’s part of the job. You learn to help support the parents, to do as much as you can to make the infant comfortable, and to make the very best of the situation that you can. If you can do all that but the baby still dies, that’s still a superhero NICU nurse in my mind. That superhero that I want to be always cares, always supports, always does everything physically possible, never giving up until every ounce of hope is gone, and every avenue has been explored. The one day that I couldn’t be a superhero NICU nurse will always haunt my mind. It will be with me forever, and it motivates me to be that superhero NICU nurse every single day once I get my RN license.

It was a normal shadowing day in the NICU when I went to the sink to scrub in. While washing my hands, I saw a large group of interns and doctors huddled around a crib. That’s a pretty common occurrence in a NICU this large, as there’s usually at least one very sick infant. As soon as my hands were dry, I headed over to the cradle. I looked in, and laid my eyes upon a very, very rare case of Harlequin Ichthyosis.

This photo is not of the actual baby, but the clinical presentation and severity was almost identical. I’m including this picture not to scare you or to gross you out, but so that you can understand what this baby must have been going through. All of this baby’s skin was peeling off. Every inch of it was red, oozing, and peeling. The baby was inconsolable, crying shrill cries and writhing in pain. I had never seen this condition before. I tried looking it up in my NICU book, but I couldn’t find anything about the condition. I didn’t know what I could possibly do for that infant. Normally, I rock the crying babies for the nurses, feed them (if age-appropriate), or change their diapers. Anything basic that I can do to help out the nurses and keep the babies calm. It felt as if there was nothing that I could do for this baby. I had never felt so helpless in my life.

The baby continued to cry, and I tried to see other patients, but I just couldn’t leave that baby. The other nurses had tried comforting him, but gave up because they needed to tend to their other patients as well. This condition is very painful, as all of the layers of the skin are peeling off at once. However, this poor infant had such a severe case that they were unable to insert an IV line anywhere…the skin would just fall off. They were giving him oral Tylenol, but it seemed that it wasn’t touching the infant’s pain, as the infant would just lay screaming for hours. They tried a pacifier with oral sucralose, but again, no effect. The baby screamed and screamed, but nothing would comfort him. He couldn’t even be picked up, because everywhere you touch the skin falls off. His eyes were red and were bulging out of their sockets, but there wasn’t much that could be done to help the situation.

I spoke with the doctors, and they said that there was no chance of survival for this infant. His condition was too severe, and there’s no cure for the disease. If by some miracle the infant was able to survive to childhood, he would have such severe disabilities and pain problems that it would have a terrible quality of life. As a NICU nursing student, especially in India, I’ve grown to understand that some of my babies will die. What I couldn’t handle was that this infant would die in pain, having the only life it ever had be several days of being separated from its mother, writhing in pain on a banana leaf. Students were gathering around, shining lights in the infant’s already bulging eyes in order to get a better picture of this rare case. I wanted to scream, to tell them to all go away.

I spent several hours next to that baby boy. At first I felt awkward, wanting so badly to hold him but knowing that I couldn’t. I held his pacifier to his mouth, giving him oral sucralose when the pain seemed to worsen. I sing to all of the babies that seem to be in pain, or that won’t fall asleep. I’m self-conscious about my singing voice, so here I’ve taking to singing in French because no one in the NICU knows any French songs, or how they’re actually supposed to sound. I stood there for two hours, singing to the baby, offering him the pacifier, and telling him that I thought he was beautiful, even if he didn’t look like all of the other babies in between the songs. It might sound stupid, but I wanted him to at least know love for a little while. I think it was too hard for his mother to be there, because I didn’t see her there at all. Every baby deserves to be loved, especially this one who’s life was cut so short.

After two hours, I couldn’t handle anymore. I had this yearning to research that I’ve never felt before. I left and literally almost ran to the library. I researched for hours, only finding cases of infants who had the condition and died, or who had access to very advanced technology that was not available in this setting, and even if it were, the results still had poor outcomes. I poured through articles, and finally found one tiny little tidbit of information that might help this poor baby. There was a single documented case of treatment of sterile gauze soaked in slightly chilled, sterile saline over the eyes that helped to decrease the swelling and pain in the eyes. Excited after hours of research to finally find at least one tiny thing that might help ease this infant’s suffering just a little, I went back to the NICU. I told the nurse about what I had read, and she said that she would discuss it with the doctors to see if it might be a viable option. I was so excited. I came back the next day, and found out the baby had died before they could try the intervention. I felt like such a failure. I felt like I hadn’t done enough. Not only had I not pushed enough for trying this intervention, but I hadn’t even been there for that long with the baby during its pain and suffering. For about a day or two I felt like a failure. Then, I just became determined.

Through this whole experience, I researched in a way that I had never researched before. I threw aside all of my assignments that I had due for my classes, and just researched my heart out. While it was tedious and frustrating at times, I learned so much. I was able to put in the time for my patient that a doctor might not be able to devote to a single patient, depending on his or her caseload. I want to be the NICU superhero nurse that does more than just her job description. I want to keep researching ways to improve the lives of all of the infants that I have, not just the terminal ones. It really built in me a passion to keep fighting for my infants, because even if it’s just a tiny thing, it might just make the life of an infant just a little bit better.”