The ultrasound indicated that the mass on Bennett's
Identifying information (including the patient's name and the location of the tumor) has been changed in order to protect the identity of those described.
chest was 9 × 11 cm large, nearly the size of his body. It was already compressing his trachea and would make it difficult, if not impossible, to intubate him after birth. Even if we could stabilize him in the delivery room, the tumor had formed its own complex blood supply and would be impossible to resect.
“I can still feel him moving inside of me,” his mother whispered, cradling her swollen abdomen. “What if it isn't as bad as we think?” she asked hesitantly, scanning my face for a flicker of hope. After multiple MRIs and meetings with various specialists, she and her husband had chosen palliative care for their only son. Steadying my gaze, I assured her that we would do an evaluation after he was born, and if the mass were somehow smaller or less complex than the images had indicated, that we would do everything we could to save him.
The next morning, we warmed the operating room and dimmed the lights. I waited anxiously in the corner, humming the chorus of Louis Armstrong's What a Wonderful World to myself, as I rolled a glass vial of Ativan between my fingers. The obstetricians took their time carefully dissecting her abdomen for the cesarean section, but when it came time to extract Bennett's body, they were unable to get him out.
The tumor had continued to grow rapidly and was now causing high-output cardiac failure and hydrops fetalis, an accumulation of fluid around the heart, lungs, and abdomen. All this extra fluid made his tissues extremely delicate, so when they finally passed him to me, his skin literally fell apart in my hands.
Locking eyes with one of the surgeons, we exchanged a panicked glance: this was much worse than we had anticipated from the prenatal scans. Feeling the sting of fear and bile rising in my throat, I held Bennett gently against my sterile gown. Placing my left hand beside the large, ulcerated lesion on his chest, I used my right hand to hold his slippery scalp against his skull. Every movement of my fingers caused increased evulsion of his skin and I was achingly aware of the fact that I was causing him further agony during his only minutes on Earth.
Even with heart failure, a large tumor, blood loss and prematurity, he still managed to gasp twice for air in my arms. I am continually amazed by the fight these tiny humans have in them from the second they're born - that unrelenting will to live despite the odds.
However, given his heart failure, fragile skin, and high risk for dehydration, we knew that intubating him and attempting to save him would only prolong his suffering, so we wrapped his head in a newborn hat and placed warm towels around his body. He bled through them twice so we added an additional layer of waterproof padding between the blankets and gave him a dose of sublingual Ativan to ease his discomfort.
All these things occurred in less than 5 minutes. His mother's abdomen was still splayed before me on the operating room table, draped under sterile gowns, when I placed him directly on her chest as she had wanted. His face was so swollen that I had to point out his eyes, nose and mouth to his parents. We took pictures while they held him – trying to avoid the glare of the operating room lights, the sterile masks, the gowns, and other medical supplies – realizing that these would be the only photos they'd ever have of their tiny family.
Soon, his heartbeat was barely detectable, just a quick flutter against my probing fingers, and then it was gone. Kissing his mottled face, they whispered soothingly to him, pressing their lips against his slick, black hair.
They held him, they held each other, and they cried. And while I recognized the loss and torment in their eyes, I saw something else that morning I hadn't expected to see – pure, untarnished love, acceptance and gratitude for their brief time together.
Bennett's condition was lethal and disfiguring but it didn't matter to them. For those few, fleeting moments, he was perfect. His parents were young, but loving a child they knew would never grow up had left his mark on them and they showed more strength, courage, and tenderness that day than I have seen from most.
Despite the pain and death that sometimes fills the neonatal intensive care unit, I am often gifted with snapshots of peace and grace scattered amid the turmoil – the expression of trepidation and excitement as a new father cuts the umbilical cord; the first secrets whispered from mother to daughter under the glare of the operating room lights; the wave of anticipation that fills the birthing suite the first time a child cries – bearing witness to the messy, beautiful collision of hope and fear, anger and acceptance, life and death.
It is during these times, the worst of all days for a physician, that I find comfort in knowing that Bennett's few, precious moments alive were filled with warm blankets, softly spoken sentiments, and the people who cherished him the most. Recalling Louis Armstrong's words, “The bright blessed day, the dark sacred night,” I think to myself – if for only the briefest of moments – what a wonderful world indeed.
Financial Disclosure: The author has no financial relationships relevant to this article to disclose.
Published online: September 03, 2019
The author has no conflicts of interests to disclose.
Copyright © 2019 by Academic Pediatric Association