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The “Care” in NICU Care Management

September 2015 Blog, Stories from the NICU Comments Off on The “Care” in NICU Care Management



Through proactive, frequent communication with providers and the families of medically complex infants, quality naturally improves and costs naturally diminish


. . . this was the catalyst that inspired Dr. Stang to establish ProgenyHealth—a mission-driven organization solely focused on care management for infants who begin life in a neonatal intensive care unit (NICU).

Individualized care management is an excellent vehicle to address the values, needs, preferences, and circumstances of each family. I’d like to share a recent success story with you that celebrates the delicate balance of art and science involved in empowering families of medically complex newborns and highlights our case management program.

Here at ProgenyHealth, every NICU family is assigned a dedicated nurse, and this is one of the reasons why – it takes persistence, patience, and consistency to earn the trust of someone with experiences like Deborah*.

Deborah is the mom of Jeremiah* a NICU micro-preemie born with bilateral clubfeet. The condition is fairly common, occurring in one of every 1,000 newborns. Most children who are treated properly can run, play, and live active lives. Conservative, non-surgical approaches are used today with excellent success rates. Adhering to the bracing regimen, however, is absolutely necessary to successfully treat clubfoot.

Barbara, a NICU nurse case manager at ProgenyHealth, introduced herself to Deborah shortly after Jeremiah’s birth. During a needs assessment, she learned that Deborah’s husband was disabled; she had little family support, no vehicle, and five other children, one of which is autistic and has his own set of medical needs.

After discharge from the NICU, Jeremiah required several follow-up appointments. However, the offices recommended by the hospital were a logistical nightmare for Deborah based on her reliance on public transportation. She tried, but her carefully planned route and timing of buses usually fell to pieces, causing her to arrive late or miss appointments altogether. The physician office staff eventually began treating her rudely, heightening her distrust of her care system and discouraging her altogether. Ultimately, Jeremiah was not receiving the stretching and bracing necessary for his clubfeet and was falling behind in other important health milestones.

It wasn’t easy, but Deborah eventually began accepting help from us. Barbara provided education and arranged social support services. She arranged for a physical therapist to come to Deborah’s home to work with Jeremiah. She scheduled orthopedic appointments that were closer to Deborah’s home as well as transportation services through a medical assistance transportation program (MATP). Barbara called each day before Deborah’s appointments to verify that she had reliable transportation.

With regular, proper treatment, Jeremiah graduated our program after his first birthday, with the ability to enjoy a wide range of physical activity, with little trace of his birth deformity.

When a plan of care is developed collaboratively and families are reliably supported, several benefits are realized – health care resources are used more efficiently, families are more satisfied with their health care system, health outcomes improve and costs for providers naturally diminish. Conversely, we learn how systems of care actually work versus how they are intended to work.

Without case management, and a caring, dedicated nurse to earn Deborah’s trust, her inability to keep up with Jeremiah’s care and her distrust of her medical team would have negatively impacted her son’s health—not only in the first year but for the rest of his life.

*Names have been changed to protect the privacy of these individuals

About Our Author:

Jeff Mays is the Director of Strategic Accounts at ProgenyHealth. His 20-year career in healthcare has been dedicated to collaborating with the brightest minds to measurably improve lives and affect lasting, positive change.