NICU graduates: Be advocates for their healthcare

Caring for the medically complex neonatal intensive care unit (NICU) graduates is a challenge for everyone: the very stressed parents and family members, physicians, physician specialists, nurse practitioners, nurses, and early intervention specialists including physical therapists, occupational therapists, and education specialists. Drs Hobbs, Hussey-Gardner, and Donohue provide us with the results of their survey of pediatricians, who were members of the American Academy of Pediatrics residing in northeastern United States, who were queried about a variety of issues affecting their comfort level in providing comprehensive health care services for NICU graduates within the medical home model.

The authors identified several important issues that can be addressed by changes to resident education such as providing more hours of NICU experiences and continuing medical education programs that provide a knowledge base for pre-discharge planning and community resources. The authors suggest that future research studies address the realities of caring for medically complex infants. I recommend including pediatric nurse practitioners (PNPs) in future research studies. Many PNPs have had years of experience in the NICU and high-risk follow-up clinics as an RN caring for the infants and families on a daily basis for several months. As such, they have a unique perspective on the needs of the families and infants. Whether these experiences affect the comfort level of the PNP in providing primary care services for the NICU graduates is unknown at this time and, in my opinion, worthy of inquiry as it may provide insight into experiences that may improve the comfort level of all primary care providers in caring for NICU graduates.  

Another major issue discussed by the authors is a lack of adequate national and subsequent state funding to provide the care and services so desperately needed by the NICU graduates and their families to enable the infants to thrive and reach their fullest potential. The authors reported that 8 states are considering dropping out of the federal early intervention program due to increased state costs and budget concerns. In an era of healthcare reform and the Affordable Care Act, the thought of depriving NICU graduates and their families of essential medical and early intervention services is unthinkable!

I am in awe of the successes of so many NICU graduates. One year ago, I had the pleasure of hearing the valedictory address by one of my PNP graduates who identified herself as a NICU graduate. She weighed a little over 1 pound at birth; spent several months in the NICU; and spoke of her parents’ love, commitment, and strength in caring for her as an infant and throughout her childhood. Her success is also attributed to the many physicians and nurses who cared for her during the most critical moments of her early life and the months after graduating from the NICU. To continue to hear of NICU graduate successes, NPs and all healthcare providers must advocate for continued national and state legislation and policies that supports health care funding for NICU graduates.