Who Is at Risk?

High-Risk Infant Follow-up

Isabell B. Purdy, PhD, NNP, CPNP; Mary Alice Melwak, PhD, CPNP


NAINR. 2012;12(4):221-226. 

In This Article

High-risk Infant Discharge Planning

National and State Recommendations for High-risk Discharge

Nurses should be skilled at targeting risk factors early so they can assist parents of high risk infants in accessing specialized post-discharge health care and community resources. In 1998 the AAP suggested there are six quality elements for high-risk infant discharge:[1] first, individualized parental education and checklists to prepare parents to adequately provide the care their infant needs. Second, cover the infant's primary care needs to assist in the transition home (eg, immunizations, metabolic screening, and auditory, and vision screening). Third, fully evaluate the infant's medical condition and problems yet to be resolved and diagnostic studies needed prior to discharge. This includes a clear written discharge plan with the results of any diagnostic studies and should be provided to the parents indicating the pediatrician and specialists who agreed to accept this child and the scheduled appointment date and office contact phone numbers. This is truly a team effort that takes time and skill to prepare from the start point of admission through discharge. Fourth, establish an individualized home care plan working with the parents to set up medication, feedings, and exercise schedules. Fifth, identify and mobilize needed surveillance and support services. Sixth, pre-discharge determination of who is at-risk for mortality and morbidity and in need of referral to a HRIF program. Checklists and weekly discharge rounds are useful in discussing changes in risk status and pre-discharge planning for referrals. In 2008, the AAP updated the prior policy statement to establish a framework for guiding discharge decisions and to recognize readiness for hospital discharge among the following at-risk infants: (1) the preterm infant; (2) the infant with special health care needs or dependence on technology; (3) the infant at risk because of family issues; and (4) the infant with anticipated early death.[2]

Nurses can identify obstacles that exist and help establish team goals for discharge readiness and to prevent further risk for failure to thrive which can result in poor growth and deficits in mental and motor development.[47,48] Adequate feeding and nutrition goals are critical to prevent failure to thrive for infants who chronic conditions (eg, CHD, CDH, NEC, CLD, or genetic syndromes).[49,50] Goals should be centered around addressing the underlying concern related to concerns about calorie intake, calorie absorption or calorie expenditure.[51] Predischarge feeding readiness goals should includes demonstration of an adequate sustained pattern and duration of weight gain which many clinicians consider a minimum of 15 to 30 g/d over several days. Infants also need to demonstrate adequate temperature stability in open cribs, physiologic and cardiopulmonary maturity including during feedings for a sufficient duration of time. The psychosocial, education, and financial resources of the parents highly influence at-risk infant outcomes. Pre-discharge referrals to resources for health insurance, community services, social surveillance, or alterative placement programs need to be established and documented. Many at-risk infants are discharged on numerous medications, oxygen, special diets, that can be overwhelming to caregivers who lack support systems in the home. Post discharge these fragile patients should be monitored closely by pediatricians, specialists and HRIF to assess problems and intervene in a timely manner.

The California Children's' Services (CCS)–funded HRIF program provides one model to support quality improvement initiatives for NICU discharge and follow-up of high-risk infants.[52] CCS funded NICUs are mandated to ensure that at-risk babies are identified prior to discharge and referred to either an organized HRIF program at their center or that the NICU has a written agreement for provision of services at another HRIF program. The goal is for at-risk infants to be scheduled periodically approximately every 6 to 8 months throughout the first 2 to 3 years of age to assess progress and needs (eg, physical, developmental, psychosocial, etc). The NICU HRIF clinic teams vary but often include a combination of specialists (e.g. neonatologist, nurse practitioners, pediatric development physicians, dieticians, occupation and physical therapists, and social workers. The neonatologist and nurse practitioners, who are familiar with the infant's medical conditions and issues, can help bridge care as pediatricians often defer back to the NICU specialists to adjust medications and equipment and provide a second set of eyes in evaluation of complex patients post NICU hospitalization. Nurse practitioners, therapists, clinicians, developmental specialists, dieticians, and social workers collaborate to evaluate the patient's developmental outcomes, diet, growth, and psychosocial needs. Case management includes assistance with intensive chart review, prescription refills, parent re-education, insurance, appointment scheduling, and communication to subspecialist, primary medical doctor, and community resources for early intervention services. To assure quality of care, CCS enlisted the California Perinatal Quality Care Collaborative about five years ago to gain input from HRIF coordinators across the state to establish a statewide HRIF database.[52] CCS raised the bar on NICUs and HRIF programs statewide in three ways. The CCS/California Perinatal Quality Care Collaborative HRIF database encourages NICUs to utilize their infrastructure to recognize at-risk criteria ( Table 1 ) in the database. CCS encourages pre-discharge planning for referral to HRIF clinic services through the database. The NICUs and HRIF clinics are expected to self-monitor referrals and infant follow-up to identify outcomes, address needs, and limit loss to follow-up.