Written by Dr. Ana Ruzic Do, a pediatric surgeon at the University of Kentucky
For anyone who cared for Connor and his family during his 6-month NICU stay, he is the very definition of hope.
Prior to meeting Connor and his family, they had already lived through a hailstorm of trauma, sufficient to last them a lifetime, known only to those experiencing a premature birth and the subsequent marathon of the NICU. For NICU parents, meeting a surgeon is never an easy feat. All too often it indicates a need for an emergent operation. All too often we’re meeting in a sudden, unexpected way. And on the day I met Connor, he had gone from well to critically ill in a matter of hours.
In the morning, he was eating and growing, and by the early afternoon, he was in advanced stages of necrotizing enterocolitis (NEC), a severe intestinal infection. By the early evening, he was in multi-system organ failure, which only begins to describe the gravity of his illness. Mortality of advanced NEC often reaches above 50%. More than half of these babies do not make it, despite aggressive management and all the advancements of modern medicine. And survival alone does not always mean leaving the hospital healthy. Connor survived and left the hospital healthy, giving us one of the most inspiring stories of hope from the NICU.
Babies who survive NEC, often battle the consequence of short gut syndrome, leaving them dependent on IV nutrition (TPN), which can ultimately lead to liver failure and the need for multi-organ transplant. The latter is only possible if they can grow fast enough to be eligible for one, not to mention live long enough to find suitable organs.
Connor weighed 1200 grams and lost nearly 50% of his small intestine. On the evening of his first operation, he was so fragile, we could not even move him to the operating room. In the course of the following 5 days, he underwent 3 major operations. And somewhere in the midst of it all, his kidneys stopped making urine.
I don’t know the true mortality of neonates with NEC and severe renal failure. None of us do. Suffice it to say, it is unforgivably high. What I do know are the names of all the babies like Connor, who did not make it. And I remember their parents’ names. Above all, I know the permanent impact this disease has on entire families, leaving them with an unbearable loss. All of us walking the halls of the NICUs (the neonatologists, surgeons, nephrologists, nurse practitioners, PAs, nurses, other parents) know it, too. That loss is personal to us as well. I’d like to believe that perhaps because of such tragic losses, Connor is with us today. We have learned so much from the babies who are no longer here.
When the kidneys fail, the body fills up with toxins and fluid, and the kidneys’ function must be replaced by dialysis. The dialysis in turn continues until the renal function recovers or further treatment becomes hollow. I know that sounds like the antithesis of hope. Yet, we have the responsibility to our patients and their families, and each other, to recognize that point of no return.
Today, when the kidneys fail, their function is replaced by dialysis. Unfortunately, we have no great way to dialyze 1200-gram babies. We have the experience of other babies who have taught us all of the ways that do not work. For our babies who are no longer with us today – that is their legacy.
With Connor, we had to improvise, think outside of the box, and believe in something far greater than each of us individually. Above all, we had to rely on faith in each other. As joined as we are by this story, we are all different in the ways we approach medicine and patient care. We are guided by our own stories, each as different as the next. We do not always agree and that is exactly what Connor needed – for us to challenge one another, our biases, our previous outcomes. This is also the story of true multidisciplinary medicine, which takes the impossible and makes it the standard of care.
After approximately 2 weeks from the onset of NEC, Connor’s renal function began to recover. Ahead of him still laid 2 more surgeries, challenges of short gut syndrome, weaning from mechanical ventilation, and learning to eat again, just to name a few. In those 2 weeks, nurses performed manual dialysis every 15-30 minutes for 12-hour shifts at a time. And while the physicians came and went, Connor’s neonatal nurse practitioners, kept it all consistent and together for us all. For months, along with the nurses, they encouraged his family, nursed his wounds, protected his development, loved him, and bonded with him the way only mothers do, before having to let him go. This is their story, as much as it is Connor’s.
By the time he was discharged home, Connor crossed paths with 11 neonatologists, 4 pediatric surgeons, 15 neonatal nurse practitioners and PAs, 2 nephrologists, 9 surgery residents, and dozens of respiratory, music, speech, occupational, and physical therapists, each an essential piece of his puzzle, without whom this story would have never been written. I cannot begin to touch on the village it took to get him home. Nor can I begin to describe the dignity, compassion, and kindness with which his parents graced each of us, despite living through the battle of being a NICU parent. This above all is their story.
Those of us who take care of neonates carry within us a healthy dose of realism, which we drown with cautious optimism every time we walk into the hospital. Hope is that intangible quality of pediatric physicians, in whose shadow we walk each and every day, careful not to share it too much or risk losing credibility. We hold it close, nonetheless. It is our guiding light, held brighter by the courage of our little patients and their families, breathing life in the very walls that surround us. Hope is that “Connor pee-pee dance,” invented by one of our surgeons and then completely embraced by our residents – the dance we all clumsily waltzed on rounds until one day Connor’s kidneys recovered. True story.