BY THERESA M. LITZINGER, BA, MSN, RN, CCM
Walk through a neonatal intensive care unit (NICU) and you will see walls of monitors, rows of isolettes, ventilators, IV pumps and feeding tubes. There are a myriad of medical staff including physicians, nurses, social workers, respiratory therapist and others. Inside the isolettes are the tiniest of human beings. Most have been born prematurely between 23-36 weeks gestation, some weighing less than a pound. You may see a few small cribs or “open beds” where babies who have achieved the ability to maintain their weight and temperature are quietly sleeping or irritably crying. There is a rocking chair where a tired parent sits, gingerly holding their infant, careful not to pull any of the tubes or wires. In the next space, a parent is gently holding their baby’s hand through an open isolette port because the baby is not yet stable enough to be outside of that controlled environment. There are spaces where the chairs are empty because the family lives a long distance away from the hospital, too far to travel during the work week, or perhaps the baby is waiting for a foster family. Another space is occupied by parents and grandparents, huddled around an isolette crying and supporting one another. There are parents getting ready to take their baby home after months of hospitalization, they are excited but anxious. Each baby is unique, each family with their own set of concerns and needs when it comes to going home and staying home.
NICU Population
The Centers for Disease Control and Prevention (CDC) reports that 10% of babies born in the U.S. experience hospitalization in the NICU, many due to premature birth and the complications that come with it. The rate for preterm birth is around the same, at about 10%. For the non-Hispanic Black newborn population, the rate of NICU admission and premature birth is at 12% (Martin, Hamilton, & Osterman 2020). The level and duration of NICU care varies based on gestational age, medical diagnosis and need for surgical treatment or technological dependance. Common medical complications due to preterm birth including apnea, bradycardia, anemia, jaundice, temperature instability, poor feeding and slow weight gain may require hospitalization for only a few days to weeks. More complex respiratory, cardiac, genetic, digestive and multisystem issues or extreme prematurity require prolonged NICU stays, sometimes many months. Newborns with neonatal opioid withdrawal syndrome (NOWS) NICU stay will vary based on symptoms and family dynamic. Not all babies requiring NICU stays are preterm; some have been born at term with congenital anomalies or conditions that require medical monitoring or surgical interventions. Just as the medical conditions of the babies in the NICU varies, so do the circumstances of the parents and families.
For the NICU family anxiety, uncertainty and stress are heightened because of premature delivery, or medical complications. Parents of babies in the NICU can experience emotions like guilt, fear and grief. Parents may not feel like they actually are parents or that they are bad parents (Haward, Lantos, & Janvier, 2020). The risk for maternal post partum depression is nearly double for mothers whose infants are born prematurely than those whose babies are born at term. Fathers of premature infants experience higher risk of depression as well (Shovers, Bachman, Popek, & Turchi, 2021). Disruption to the family unit due to hospitalization can take a toll on siblings and other family members. Financial burdens due to long hospital stays, missed work and travel expenses may exist. Cultural beliefs may be challenged. Parents may feel overwhelmed by the NICU environment and the interactions with multiple doctors and staff. They may have tough decisions to make about the care of their baby and may not always agree with their partner or the medical staff. Parents may experience grief over the loss of a typical birth experience and loss of a healthy happy baby. The baby may face long-term disabilities or medical needs. They may feel overwhelmed and disconnected from their infant and parenting role (Prudy, Craig, & Zeahana, 2015). These feelings and more can easily carry over to the home once the baby is discharged.
Going Home and Staying Home
Going home from the NICU entails, at a minimum, close follow up with the pediatrician. For many, there will be the need for technological support at home, shift care nursing, multiple specialist visits, developmental therapies and treatments, specific feeding techniques, parental behavior health or substance use treatment and more. Making connections with PCP, specialist and early intervention services once home from the hospital can be daunting for new and experienced parents alike. The NICU graduate is also at risk for readmission after the first discharge to home. Parents need to be tuned in to their baby to recognize signs of sepsis, jaundice and dehydration which are among common causes of readmission (Hannan, Hwang, Bourque, 2020). Regardless of the duration of stay or complexity of post discharge care, the case manager has the opportunity to support families after NICU discharge. By building relationships through early and frequent engagement, the case manager can help families navigate the complex medical system, prevent avoidable readmissions and emergency room visits, and help families to take control of their child’s care. The NICU graduate family case management goals can include:
- Support the parenting experience by:
- using motivational interviewing techniques to identify parent concerns and priorities.
- assessment of parental behavioral health/postpartum depression and making appropriate behavioral health referrals.
- connection to community-based parenting and childcare resources including early intervention services.
- assessment of SIOH and referral to appropriate resources.
- reenforcing developmental goals for the premature infant.
- reviewing discharge instructions and addressing any gaps in understanding or additional needs since discharge. This could include medication administration, DME and medical supply use and feeding instructions, etc.
- providing emotional support and suggestions for working with healthcare professionals in the home.
- reenforcing safe sleep practices
- Facilitate communication between PCP and parent through:
- educating parents on the role of the PCP, helping them to prepare for next PCP visit and review concerns from previous visits.
- educating on well-baby care, safety and development keeping in mind the baby’s gestation age and diagnosis.
- educating families on when to contact the PCP and when to visit the emergency department.
- encouraging parents to ask questions of the PCP.
- Support parents in navigating the complex medical and developmental system by:
- reviewing needed specialist and therapy appointments.
- assisting with scheduling appointments in a timely way and grouping appointments when possible.
- assisting families with record keeping and contact information for all those involved in their baby’s care.
Summary
The birth of a child brings many emotions and is a life-changing event. The parent of the child in the NICU has experienced a disruption in the typical birth event due to hospitalization and medical concerns. The parent infant bond is disrupted, typical homecomings and events are delayed, stress and anxiety related to the infant’s care and wellbeing are results of NICU hospitalizations. Once the infant is discharged, a new set of responsibilities and stressors follow the baby home. The information provided here is not a full picture of case management for NICU graduate families. Best practice research is not readily available specific to NICU post discharge case management. What is clear, though, is that the NICU experience impacts not only the infant but the entire family and especially the parents. Building relationships with NICU parents and supporting them during the post discharge period can help parents take charge of their own care and that of their NICU graduate baby.
References
Haward, M. F., Lantos, J., Janvier, A., & POST Group. (2020). Helping parents cope in the NICU. Pediatrics, 145(6).
Martin JA, Hamilton BE, Osterman MJK. (2022). Births in the United States, 2022. NCHS Data Brief, no 477. Hyattsville, MD: National Center for Health Statistics. 2023. DOI: https://dx.doi.org/10.15620/cdc:131354.
Purdy, I. B., Craig, J. W., & Zeanah, P. (2015). NICU discharge planning and beyond: recommendations for parent psychosocial support. Journal of Perinatology, 35(1), S24-S28.
Shovers, S. M., Bachman, S. S., Popek, L., & Turchi, R. M. (2021). Maternal postpartum depression: risk factors, impacts, and interventions for the NICU and beyond. Current opinion in pediatrics, 33(3), 331–341. https://doi.org/10.1097/MOP.0000000000001011
Hannan, K. E., Hwang, S. S., & Bourque, S. L. (2020, June). Readmissions among NICU graduates: Who, when and why?. Seminars in Perinatology (Vol. 44, No. 4, p. 151245). WB Saunders.
Theresa M. Litzinger, BA, MSN, RN, CCM, has over 30 years of experience in pediatric nursing and 10 years of pediatric case management and management experience in various post-acute settings. She holds a BA in Elementary and Special Education as well as a MSN in Nursing Administration.
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