Desirée Smiled

“Meet Desirée.” The nurse turned to us and watched our eyes move from her’s to the yet-unseeing ones of the 24-week-old premature baby just an arm’s reach away. Little Desirée lay swaddled in blankets in her carefully temperature-controlled bassinet, gently prodded by tubes that helped her breathe and gave her nourishment. She weighed less than 1 lb. My breath caught a little.

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The nurse pulled Desirée’s right arm from underneath the blanket and showed us why this little girl wouldn’t be able to use her hands in the same way as other children.

“She has a congenital hand deformity,” the nurse explained, “but luckily she still has her thumb.”

Luckily. The frankness with which the nurse spoke made me think about just how many such abnormalities she must have seen before in the Neonatal Intensive Care Unit (NICU). No matter how frank she was, the use of that word–luckily–was the right one, I decided. She was setting the tone for the optimism that Desirée and her parents would need to have as they navigated a childhood that no one could have ever predicted. As I looked down at little Desirée, a small smile began to play on her lips.

She must know we’re talking about her,” said the nurse, all the love and happiness of a true caregiver radiating out of her and towards the baby.

The nurse talked on and on about the conditions that the doctors had discovered upon Desirée’s birth. She explained that the little one would probably also be wheel-chair bound as she grew older and had craniosynostosis, which meant that doctors would have to watch her skull growth carefully since one of her sutures had fused prematurely, thus preventing skull expansion perpendicular to it. In addition to that, she had a rare stomach abnormality and other conditions that the doctors weren’t even sure how to diagnose yet. My mind buzzed with all the information that the nurse was sharing–all of which would forever change the life that this small child hadn’t even begun living yet. Though only 24 weeks old, she had no idea how much she was teaching me while my heart was hurting for her. But all the while, Desirée smiled.

*****

As best as I can encapsulate it, that was just a fraction of my experience visiting a NICU and seeing a room full of premature babies at different stages of life and growth. It was nothing short of incredible to see the tiny hands, feet, and heads of human beings that weighed so little and yet filled the room with their presence.

For a premature baby born just 24 weeks into gestation, life’s balance lies entirely in hands of the doctor who cares for her.

As we walked from one crib to another, many questions buzzed in my head as I wondered about theses babies’ lung development, since the surfactant which reduces the surface tension of fluid in the lungs–thus allowing an individual to exhale without the lung collapsing–is made by the fetus while in the womb. Premature babies often lack an adequate amount of surfactant and must be treated with specific therapy after birth. (I guess that Biology class was good for something after all :))

I wondered about the bond between mother and child. Wouldn’t it be harmed irreparably by the fact that these babies were separated from their mothers for so long after birth and cared for by so many other doctors and nurses? In response to my question, the nurse giving the tour of the NICU explained that each crib had a camera that was connected to an online feed that the baby’s mother could use to see her baby whenever she wanted. It’s fascinating how technology has been able to step in where distance would otherwise prove to be an insurmountable obstacle. Once the baby has grown sufficiently, the mother might choose to participate in a kangaroo care program, where the baby is placed in a small pouch on the mother’s chest so that both can experience skin-to-skin contact that would normally occur immediately at birth. As we walked around, I couldn’t believe my eyes as I saw babies that almost certainly had deformities that the nurses and doctors knew would render them immobile, or big splotches on their lung x-rays that called for additional treatment or time in the hospital. Despite the sometimes dire circumstances that these babies found themselves in, their lives were being saved by the combination of human compassion and technological innovation that filled the NICU.

****

Leaving the NICU, I felt I had a deeper understanding of what these doctors were doing on a day-to-day basis beyond “helping people” or “saving lives.” Sometimes I think these phrases are so hackneyed that they border on cliché, but that doesn’t change the fact that they are trying to communicate a truth that is really best understood when you can see it for yourself. Even though I had known that doctors who work in critical care are unique in that their patients are in life-threatening situations, after visiting the NICU, I became distinctly aware of the different stages at which a life can be saved. In other words, I was touched not by what, but by the question of when.

Thinking about it, I wonder, how different is the work of saving an 85 year-old’s life versus that of someone who is less than a few months old? If we think about life like a story, then every patient is living in a different part of the narrative arc–from prologue to epilogue, the writer’s pen and thus the doctor’s actions must change accordingly. For me, visiting the NICU was a step into the neonatal narrative, which is almost universally stuck in the prologue until the baby, swaddled in blankets and love, leaves the hospital in her parents’ arms.

When you look at a 24-week-old human being, your heart doesn’t almost stop because you’re paralyzed with fear or hope or distress or love –it almost stops because you feel the weight of the immense possibility of this new life pressing against the rhythm that pulses through your entire body, and it makes you realize that if you could do one last thing if it were to stop in the next moment, with all your heart you’d want to give that life a fighting chance.

Desirée, keep smiling.

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