Born earlier than expected: The costly miracles of modern medicine | Viewpoint

The NICU has not been around for as long as one might think. In generational terms, the modern neonatal intensive care unit as we know it would be a Boomer, just over 65 years old, newly eligible for Medicare and discounted movie theater tickets.

In just over six decades, advancements in neonatal technology, technique, and process have made incredible strides. Every five years, it seems as though a breakthrough technique extends our ability to perform medical miracles, and help our littlest ones, born earlier than expected, survive outside the womb.

These babies are nothing short of medical miracles. Even 20 years ago, these outcomes were inconceivable. Yet, as our national conversation around mounting healthcare costs continues, it would be remiss not to mention: saving these littlest lives is extremely resource-intensive.

As we continue to advance our capabilities, we also need to ensure our micro preemie care pathways are built more sustainably. In the sections that follow, I’ll outline the hidden costs of NICU care, the long road to recovery, and ways to improve the process for families, physicians, and health plans, too.

Going home is just the beginning

For micro preemies and their parents, discharge is both celebration and challenge. Against all odds, these little ones have made it. While this is momentous, the reality of caring for their complicated newborn can hit new parents hard. Stresses abound. Without nurses, monitors, and machines to provide advice and oversight, keeping their little ones alive and healthy can feel both overwhelming and terrifying.

From managing specialized feedings and prioritizing continual weight gain, to monitoring for developmental delays and processing the influx of medical bills, these parents shoulder a heavy burden. While under enormous financial duress, determining how to pay for these unexpected medical costs, many parents of preterm infants struggle to maintain employment while also juggling caring for their infants.

The lower a child’s birth weight, the more likely a parent is to leave the workforce. According to one study published this year, this is true for 20% of families with a very low birth weight baby (born under 3.3 pounds). It is challenging to find home nursing support that is adequate to fulfill the hours of care that is needed so that a parent can continue their career aspirations. Caring for their babies becomes a full-time job—one they may not feel fully qualified for.

Needless to say, parents of micro preemies need more support during this critical transition period. Even though they’re home, these babies are not out of the woods yet. Research shows a relatively high incidence of costly readmissions after initial discharge. According to one study, 8.5% of all infants with very low birthweight born in California from 2009 to 2018 were readmitted within one month of discharge.

The costs of miracle work

While these outcomes are nothing short of miraculous—priceless results of modern medicine—helping our littlest ones survive comes with enormous financial, resource, and emotional costs, all of which are hard to quantify.

Data on the average cost of a NICU stay is complicated—yet mounting ever higher. While the median spend in 2021 was calculated at $71,158, the costs range from just over $4,000 to more than $160,000, for stays ranging from 3 to 34 days. At a high level, premature births are associated with more than $25 billion in medical spend.

Micro preemies often require months-long NICU stays, and even after discharge, many suffer from long-term physical and intellectual complications. In one study of babies born at 22-26 weeks, about half had mild or no signs of neurodevelopmental challenges, while 29% had moderate disabilities, 21% had severe impairments.

Even after discharge, care for these newborns is a full-time job—requiring many expensive and specialized feeding, sleeping, and developmental tools. Not to mention the heavy emotional burden placed on these parents, harboring hope for the best, fighting for their little ones’ lives, facing steep and unspecified bills, while processing a reality very different from the one they imagined when they became pregnant in the first place.

A matter of days

The definition of a viable preterm birth is evolving—and is highly case specific. While doctors agree that babies born at 24 or 25 weeks can and should be treated, there is no real standard course of treatment for babies born younger. While lifesaving care for preemies as young as 21 weeks is now considered possible in rare cases, it is not commonplace.

Caring for infants this small is highly technical, and only feasible at the most experienced of NICUs. Indeed, the line between life and death is a lot hazier for those babies born just beyond the halfway mark and before 25 weeks. Colloquially known as the “gray zone,” this critical window of time between 20 weeks and a day and 23 weeks and 6 days, is highly subjective. To make matters even more complicated, it is difficult, or impossible, to know which hospitals will attempt lifesaving care at every stage of preterm delivery.

For many pregnant women, that means their babies’ chances of survival hinge on even a matter of days in utero—which helps underscore the importance of fostering healthy pregnancies. Quality prenatal care can make an outsized impact on gestational term. In one analysis, women without prenatal care had more than a 7x higher risk of preterm birth.

Yet, as maternity deserts grow and equitable access to obstetricians is shrinking, critically important prenatal care is not readily available to every mom-to-be. To help give every baby a fighting chance and promote healthier deliveries, we need to begin by promoting health literacy and partnerships between health plans and physicians that focus on care management, healthy habits, and attendance at regular prenatal visits.

Making lifesaving care sustainable—and scalable

The best path forward sees us refining the work we know to be possible. We can replicate our lifesaving efforts, and work to make them more efficient, more scalable. End-to-end approaches that simultaneously support health plans with managed care, and new families with hands-on, personalized case management offer the most comprehensive approach.

Firstly, to make a real difference, we need to start earlier upstream. Providing whole person maternity case management can help drive healthier outcomes. By managing pregnancy risks that contribute to preterm birth, we can help reduce the incidence and severity of these cases. Heavier infants and those of higher gestational age—even by a week or two—can make a positive long-term difference.

Secondly, when specialty neonatal care is required, the need for NICU care management is vital to help ensure the best possible outcomes. These specialized teams collaborate with NICU providers on best practices to help micro preemies advance quickly through key milestones, helping to send them home with their families sooner.

Case managers (CM) support families with valuable education and hands-on coaching to ensure a safe discharge and ongoing support through the first year of life. Not only does this provide a safety net for new families navigating this challenging transition, but it helps reduce the overall cost of care, by proactively reducing unnecessary and costly ED visits and readmissions.

From advances to expansions

While neonatal care is no longer in its infancy, our approach to containing its financial and hidden costs certainly are. Today, one in ten births require a visit to the NICU—at great personal and financial cost.

At the same time, access to this potentially lifesaving care is not guaranteed for everyone. There is no database—public or private—that documents which hospitals will treat 22- or 23-week babies. While there are “Small Baby Programs” offered at some facilities, this focused care is not offered at every NICU. No family should have to guess where to go to find a fighting chance for their little one—every family deserves the same care options for the best possible start to life.

Ensuring better sustainability of the entire process, from prenatal care and education to utilization management and care management, will help advance the standardization of our approach, making it possible to extend these lifesaving options to more babies—and their families—nationwide.

Linda Genen, MD, MPH is chief medical officer of ProgenyHealth.