More than a hundred years ago they called them “weaklings.”
That was the name they used for low birthweight newborns who were small and frail in appearance compared to their healthy term newborn counterparts. Ironically, those weaklings would be considered giants now in comparison to our contemporary preterm infants, who can be as small as a quarter of the size of those historic weaklings.
Ignoring the most vulnerable in our society seems a visceral wrong, but there are far too many examples. Unfortunately, we live in an increasing world of abundant white noise “news” that prevents us from seeing the real, difficult sagas of human suffering. That is why bringing people together in a physical, and not virtual, conference is still a great way to synchronize and synergize around a common cause.
Necrotizing enterocolitis (NEC) and its tragic impact
On June 2-5, 2019, I participated in the second ever NEC Symposium in North America in Ann Arbor, Michigan. This is the place where founder of NEC Society, Jennifer Canvasser, and her husband Noah first dealt with NEC in their twin child, Micah, who passed away at 11 months of age due to complications from NEC.
The parent-led NEC Society formed and have since hosted the NEC Symposium. The coalescence of NEC families and NEC survivors along with physicians, nurses, scientists, other health professionals, government officials, parent advocates, and industry partners is a powerful demonstration of the importance and value of building a truly transdisciplinary community.
Each session at the symposium was dedicated to a different family who had lost their precious child to NEC or have raised a NEC survivor, often a child with special needs but who were warriors in their battle against gut inflammation and infection. Story after story, we heard the painful experiences of each family and the tragedy of loss or the chronology of suffering for the NEC survivors and their families. Those memories were etched into our mind’s eye. We were left with a burned image of tissue carnage, coming too suddenly and with the fury of inflammation at the highest level. Infants were swiftly taken away from their families or suffered massive bowel injury whereby they would suffer the rest of their lives with short bowel syndrome.
A small population fighting a devastating disease
However, bad diseases like NEC can easily get lost. Preterm infants make up only about 10% of the birth population. Most of our society’s focus is targeted to the largest and most powerful part of our population, aging men, and rarely on those most vulnerable.
The emphasis on the adult market and not the comparatively smaller pediatric market is undeniable and reflects the bias towards size of market. Newborns represent only 4 million out of 350 million in the US. Then drop that to about a quarter, or 1 million, that represent the most vulnerable, very preterm population. Finally, take about 5-7% from that and you’ll find this afflicted population of newborns, some the size of my adult hand, as those who are hit with NEC.
NEC represents a true orphan disease, one that far too many overlook. It is no surprise then that so little attention, including federal funding, industry sponsored research, or philanthropic efforts, has been present in conquering this devastating condition. We can applaud some processes whereby rare diseases have had some attention for funding and industry incentives, but that is not enough.1
We all seek a world without NEC. The question that was asked throughout the recent symposium was, “What will it take to create a world without NEC?”
Can NEC be eliminated from this world for good? We could start with reducing preterm birth, but that is turning out to be a more formidable challenge than many thought and it will take a longer time before a clear decline in preterm birth occurs.2 There are lower hanging fruit that involve strong collaboration to standardize best practices, particularly around feeding algorithms and mothers’ milk use, that are known to be associated with NEC prevention. These have already been shown to be powerful strategies for reducing NEC. There are also precious children who develop NEC who aren’t born premature, who may have other afflictions like heart disease, severe growth restriction, hormone imbalances, or were born with other birth defects. We are equally a far cry from understanding their reasons for getting NEC.
From the symposium, there appear to be many possible ways that NEC can be eliminated, but the strategies require research funding and dedicated effort by the medical research community with a greater integration of parental voices. We still need to figure out how to diagnose NEC. We need much more science in fundamental understanding of the interplay of the microbes in the gut and the infant’s immune system. We need more work in helping parents and staff cope with complex and scary diseases such as NEC in a way that they are both informed and not excessively alarmed by the myriad of horrible complications that could occur.
I think the true force of progress in getting to a world without NEC is likely going to be solved by the very parents of infants that have been so terribly afflicted with this condition. The NEC Society is a profoundly disruptive organization that has emerged as a leader in neonatology, specifically in regards to advocating for rare diseases such as NEC. The power of parents cannot be overestimated. Their stories move mountains while striking a deep sense of purpose and meaning amongst all caregivers and stakeholders. We have spent too many years in medicine not listening, and now we can’t afford not to hear the cries for action and more parental empowerment.
Advocacy is important in neonatology now more than ever before. When we don’t speak up for the most vulnerable, for our “weaklings,” limited resources are redirected quickly and often unknowingly to another area. We now have an international day of NEC Awareness on May 17th each year. In truth, I wish every day was such a day, but having a special day each year helps raise awareness to the hell storm NEC causes. I am privileged to be co-chairing the next NEC Symposium in two years (location TBA) and can only dream how much brighter the future for eliminating NEC will be by the community action that is growing so far. I hope to see you all then. Let us pledge to a world without NEC!
- National Institutes of Health. Finding Funding Opportunities. Retrieved from https://rarediseases.info.nih.gov/guides/pages/124/finding-funding-opportunities
- March of Dimes. Fighting Premature Birth: The Prematurity Campaign. Retrieved from https://www.marchofdimes.org/mission/prematurity-campaign.aspx