Discharge planning for high-risk newborns

INTRODUCTION — Infants who require neonatal intensive care remain at increased risk for morbidity and mortality following discharge from the neonatal intensive care unit (NICU).

This topic will review discharge planning for high-risk newborns, including preterm infants, infants with complex medical problems, infants who require medical devices or technologies (eg, gastrostomy tube, tracheostomy, ventilator), and those who require prolonged NICU care for other reasons. The focus is primarily on preterm infants <35 weeks gestation, as they represent the majority of NICU graduates. The care of the NICU graduate following discharge is discussed separately. (See "Care of the neonatal intensive care unit graduate".)

Healthy late preterm infants born at 35 to <37 weeks gestation are often cared for in the well newborn nursery, usually with a relatively short hospital stay compared with that of more preterm infants. Nevertheless, late preterm infants are at increased risk for certain complications (feeding problems, temperature dysregulation, respiratory problems) after discharge. Discharge planning for late preterm neonates is discussed separately. (See "Late preterm infants", section on 'Discharge criteria' and "Late preterm infants", section on 'Primary care follow-up'.)

OVERVIEW — Successful discharge preparation facilitates family readiness and, ultimately, improved outcomes in the important transition from the neonatal intensive care unit (NICU) to home [1]. It helps to minimize the risk of morbidity and mortality from premature discharge and to prevent prolongation of the hospital stay in an infant ready for discharge. A successful discharge planning program provides sufficient education and support to families/caregivers to help them transition successfully to home [2]. It includes assessment of the infant's medical status and readiness for discharge, preparation for families to care for their infant at home, and transitioning the ongoing care for the infant to community providers. An inadequately planned discharge to home from the NICU may increase the risk for morbidity and mortality. As a result, a comprehensive discharge planning program is needed to ensure a smooth transition from the NICU to home.

Discharge planning should be developed and implemented by a multidisciplinary team consisting of the parents/caregivers, physicians, nurses, neonatal nurse practitioners, respiratory therapists, occupational and/or physical therapists, dieticians, feeding specialists, pharmacists, case managers, social workers, and the identified primary care provider whenever possible. The process begins shortly after an infant is admitted to the NICU and is continued through regularly scheduled planning sessions during hospitalization.

The following are the components of discharge planning that are consistent with the 2008 American Academy of Pediatrics (AAP) published discharge guidelines for the infant cared for in the NICU (table 1) [3,4]. The successful completion of all of these is necessary prior to discharge as well as ensuring that the parents/caregivers feel prepared and are comfortable for discharge [5].

●Infant medical readiness, routine discharge screening and vaccination, and individual planning for specific conditions

●Discharge planning and education for parents/caregivers that includes readiness assessment of caregivers and home environment

●Identification of risk factors and, if needed, referral for community services for additional support following discharge

●Thorough communication from the NICU to the primary care provider to transition and coordinate care to the new medical home

NICU DISCHARGE PLANNING — Discharge planning for infants who require NICU care includes assessment of the patient's medical status and readiness for discharge, completion of routine discharge screening and vaccinations, ensuring safe transportation after discharge, and identifying additional needs for the individual patient.

Medical readiness — Infants ready for discharge must be medically stable and without any acute illness.

For preterm infants, discharge is considered only if an infant demonstrates physiologic stability by showing competency in all of the following functions:

●Maintain normal body temperature – Infants must maintain axillary temperature between 36.5 and 37.5ºC (97.0 and 100.3ºF) or rectal temperature between 36.6 and 38.0ºC (97.8 to 100.4ºF) in an open crib with normal ambient temperature between 20 and 22.2ºC (68 and 72ºF).

●Demonstrate maturity of respiratory control without episodes of apnea and bradycardia – The length of time before discharge that an infant should be free from apnea and bradycardia is controversial. However, five to eight days of observation after discontinuation of caffeine therapy probably offers a sufficient margin of safety [6-8]. (See "Management of apnea of prematurity", section on 'Management overview'.)

●Demonstrate mature oral feeding skills – Infants must demonstrate appropriate breast and/or bottle feeding that will allow enough nutritional intake to promote appropriate growth. (See "Growth management in preterm infants", section on 'Discharge planning'.)

●Demonstrate a consistent pattern of appropriate weight gain – There is a lack of clarity on how best to define optimal rates of growth for preterm infants. In our centers, for preterm infants with weights less than 2 kg, we use a weight gain goal of 15 to 20 g/day, and for preterm infants greater than 2 kg, a weight gain of 20 to 30 g/day. For term infants we use a goal of 25 to 35 g/day. The growth should be parallel to the normal growth curve. If the other criteria are met, attaining a specific weight is not necessary for discharge. (See "Growth management in preterm infants", section on 'Discharge planning' and "Growth management in preterm infants", section on 'Normative growth data'.)

●Demonstrate stability in supine sleeping position – The infant needs to be able to sleep with head of bed flat in a supine position without compromising the infant's health and safety. Because the medical needs of the high-risk newborn may require nonsupine positioning, each NICU should have an established protocol in place to transition the infant to a safe sleep position and environment as soon as medically possible and well before discharge, consistent with the policy published in the American Academy of Pediatrics (AAP) [9]. In addition, the medical team prepares and educates family/caregivers on the importance of maintaining a safe home environment to prevent sudden infant death syndrome. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Sleep position'.)

In some cases, the infant is discharged before one of the above competencies is met (eg, still require supplemental gavage tube feedings). In such cases, there should be a suitable plan for home care and monitoring that is agreed upon by the family, the health care team, and the medical home. This may require additional support (eg, equipment and personal) at home, which will also need to be arranged.

Routine discharge screening — The following routine screening should be completed prior to discharge:

●Metabolic and genetic disorders [10]. (See "Overview of newborn screening".)

●Retinopathy of prematurity – Infants at risk for developing retinopathy of prematurity (ROP) include those with gestational age [GA] <30 weeks or birth weight <1500 g and select infants >30 weeks with birth weight 1500 to 2000 g who have other risk factors. These infants should have ophthalmologic screening. Examinations should continue until the infant's retinal vessels are mature and no longer at risk for developing ROP. After the retinal vessels are mature, follow-up with a pediatric ophthalmologist should be scheduled before the end of the first year of life, and sooner if concerns arise such as strabismus, nystagmus, or poor visual tracking. (See "Retinopathy of prematurity (ROP): Risk factors, classification, and screening", section on 'Screening' and "Care of the neonatal intensive care unit graduate", section on 'Vision problems'.)

●Hearing screening – Hearing screening is performed using automated auditory brainstem responses. Because of the increased risk of late-onset hearing loss in neonatal intensive care graduates, follow-up hearing evaluation should be scheduled within six to nine months after discharge, and within one to three months of age in at-risk infants (eg, infants with cytomegalovirus, meningitis, or severe hyperbilirubinemia). All infants who do not pass their NICU screen should be tested for congenital CMV infection. (See "Screening the newborn for hearing loss", section on 'Neonatal intensive care unit'.)

●Brain imaging – In addition to performing earlier screening for intraventricular hemorrhage, brain imaging with ultrasound or magnetic resonance imaging (MRI) may be recommended at a postmenstrual age close to term and prior to discharge to detect periventricular leukomalacia or white matter injury in at-risk infants. (See "Germinal matrix and intraventricular hemorrhage (GMH-IVH) in the newborn: Risk factors, clinical features, screening, and diagnosis", section on 'Screening' and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Selective MRI imaging'.)

●Other tests – In specific cases, laboratory studies to document anemia (complete blood count) or monitor bone health (alkaline phosphate) may be appropriate. (See "Anemia of prematurity (AOP)" and "Management of bone health in preterm infants".)

Immunization and prophylaxis — Prior to discharge, medically stable preterm infants should receive full immunization based upon their chronological age consistent with the schedule and dose recommended for healthy full-term infants (figure 1) [11]. Vaccination in preterm infants appears to be safe, as illustrated by a prospective study of 473 very low birth weight (VLBW) infants (BW <1500 g) [12]. Adverse events at the time of vaccination (mean GA of 37 weeks) included apnea/bradycardia in 11 percent of patients and local reactions/fever in 3 percent. Infants with apnea/bradycardia were more likely to have a lower GA. (See "Standard immunizations for children and adolescents: Overview".)

Respiratory syncytial virus (RSV) prophylaxis should be given to eligible infants, as discussed separately. (See "Respiratory syncytial virus infection: Prevention in infants and children".)

Parents/caregivers and other individuals who will be in close contact with the infant should receive influenza vaccination and updated pertussis and COVID-19 vaccinations. (See "Seasonal influenza vaccination in adults" and "Pertussis infection in adolescents and adults: Treatment and prevention", section on 'Vaccination' and "COVID-19: Vaccines", section on 'Dose and interval (for immunocompetent individuals)'.)

Car seat/bed use — Preterm infants are at increased risk for cardiopulmonary compromise compared with term infants due to greater decreases in oxygen saturation and more frequent episodes of desaturation, bradycardia, and apnea while restrained in car seats or beds [13-15]. Infants with discharge weights ≤2000 g and those with prenatal opioid exposure are at the greatest risk for cardiopulmonary compromise [16,17].

Because of these observations, we concur with the following recommendations developed by the American Academy of Pediatrics (AAP) for safe transportation of preterm and low BW infants [18,19]:

●Car seat or bed screening – Observation of infants at-risk for cardiorespiratory compromise while in a car seat or bed is performed before discharge to evaluate for possible apnea, bradycardia, or oxygen desaturation:

•Who should be screened? – Screening is indicated for infants <37 weeks gestation or for more mature infants who are at risk for obstructive apnea, bradycardia, or hypoxemia, including infants with hypotonia (eg, Down syndrome), micrognathia (eg, Pierre Robin sequence), or those who have undergone cardiac surgery.

•Duration of screening – A screening period of 90 to 120 continuous minutes or the duration of travel, whichever is longer, is suggested.

•During this trial, the infant's heart and respiratory rate and oxygen saturation are monitored.

•Infants "fail" the screen if they have [20]:

-Oxygen desaturation below 90 or 93 percent for more than 10 seconds

-Apnea greater than or equal to 20 seconds

-Bradycardia less than or equal to 80 beats per minute [20]

If the infant fails the car seat screen, use of a car bed can be considered. A similar period of cardiorespiratory monitoring in a car bed should be performed prior to discharge home [19]. However, it is unclear whether car beds provide a safer mode of transportation than car seats [15,21,22].

Discharge should be delayed, and an investigation for cardiopulmonary abnormalities should be sought in any infant who persistently fails the car seat or bed cardiopulmonary screening test.

Of note, a car seat screen is a static trial and its validity as an accurate predictor of clinically adverse events has been challenged [23,24]. Nevertheless, until there is a screening test with a better predictive value, we continue to observe patients in car seats for evidence of cardiorespiratory instability prior to discharge.

●Use of rear-facing car seats – Rear-facing car seats with three-point harness systems or convertible car seats with five-point harness should be chosen (figure 2). The car seat should have a distance of less than 14 cm (5.5 inches) from the crotch strap to the seat back and a distance of less than 25.4 cm (10 inches) from the lower harness to the seat bottom [25].

●Family and care provider education – Families should be instructed by trained hospital staff on how to position their infant properly in the car seat and where they should be seated:

•Position – The infant should be positioned with the buttocks and back flat against the back of the car safety seat (figure 2). Car inserts or padding may be placed on both sides of the infant to provide lateral support for the head and neck, if needed. The shoulder straps are adjusted into the lowest slots that ensure the infant's shoulders are above the slots. The harness must be snug and the car seat's retainer clip should be positioned at the midpoint of the infant's chest.

•Placement – The infant is placed in the back passenger seat in a rear-facing car seat, which is the safest position. The infant should never be placed in the front passenger seat in a car that has a front passenger-side air bag because of the risk of death or serious injury from the impact of a deployed air bag. Whenever possible, an adult should be seated adjacent to the infant and the infant should never be left unattended while in a car seat or bed.

•Minimize duration of time – The duration of time the infant is seated in a car seat should be minimized. Families should be advised that car safety seats should not be used as a place for sleep outside of the car and should be used for the minimal amount of time required for necessary travel.

●Other considerations for infants with cardiorespiratory compromise:

•Infants with documented cardiopulmonary compromise should travel in a supine or prone position in a car bed or other alternative safety device.

•If the infant requires home cardiac and apnea monitoring, this equipment should also be prescribed and used during travel. This equipment should be wedged on the floor or under the vehicle seat to minimize the risk of it falling or striking the infant or other passengers in the car.

Complex medical needs — Some infants have complex and/or additional medical needs after discharge. It is important to consider these needs and to have a discharge care plan that allows for complex, flexible, ongoing care.

●Feeding support – Some infants will be discharged home with ongoing gavage feedings or a surgically placed gastrostomy tube. Parents/caregivers should be taught how to administer feeds and should practice inserting the feeding tube safely. Close follow-up and support with a feeding team should be arranged prior to discharge.

●Supplies – Some medications (eg, those needing compounding), special formulas, and/or dietary supplements may be challenging for the caregivers to obtain. The need for these items should be identified early so they can be acquired as soon as possible to optimize discharge teaching opportunities and to help smooth the transition.

●Medical equipment – For infants who require special medical equipment (eg, in-home oxygen therapy or mechanical ventilators, cardiorespiratory monitoring, and/or feeding pumps), referral to a durable medical equipment (DME) company is made as soon as the need is identified to allow for adequate family teaching and the delivery of DME to the home.

For respiratory care equipment, a respiratory therapist assesses the home to evaluate outlets in the infant's area, measure door openings, inquire about electrical panel location and capacity, and ensure a safe environment. Arrangements can also be made for home nursing.

For infants with substantial health care needs, additional caregivers (eg, grandparents or child care providers) should be identified and trained.

●Hospice care – Infants with an incurable terminal disorder have additional home care issues that must be considered and planned for, including referral to a hospice organization that will provide medical home visits, home-nursing visits and respite care, pain and comfort management, and provision of bereavement support for the family. If appropriate, a letter stating the infant's status with instructions not to resuscitate should be provided to the family to give to other caregivers or emergency medical workers. (See "Pediatric palliative care".)

CAREGIVER PREPARATION AND SUPPORT — Before the infant is discharged from the neonatal intensive care unit (NICU), the individuals who will be the primary caregivers need to demonstrate consistent involvement in their infant's care, and readiness and competency to provide home care [3]. During hospitalization, an individualized education plan is developed to ensure that the parents/caregivers acquire the skills and knowledge needed to care for their infant at home. The education program should be structured to include all the information they are expected to master and tailored to their individual circumstances. It should offer support, repetition, frequent opportunities to evaluate progress, and the capacity for adjustment as necessary.

Structure of educational program — Elements of the educational program include:

●Timing – The educational program begins early in partnership with the parents/caregivers and continues throughout the hospitalization to prevent the family from being overwhelmed with a large volume of content near the end of hospitalization.

●Information and content – Content needs to be consistent and provide the family with an overview of the information and skills they are expected to be confident in prior to NICU discharge, and which will be helpful after discharge.

Tools that have been found to be useful include:

•Checklist of items that need to be successfully fulfilled prior to discharge (table 1) [4].

•Written material that is presented in a manner that is simple, clear, and devoid of medical jargon, with complex words and concepts defined in precise terms.

•Pictographs, visual aids, multimedia, and recorded information are helpful to illustrate key concepts, especially with families who have limited functional health literacy. Parent/caregiver preference for visual learning versus auditory learning should be determined.

•Some families benefit from supplemental educational materials that they can review at their own pace on a smartphone or other device.

●Caregiver participation on rounds – Inviting the parents/caregivers to participate in NICU rounds in the days prior to discharge allows them to ask questions that can be directed to any member of the care team.

●Review of hospital course – For parents/caregivers preparing to leave the NICU, a thorough scheduled review of the hospitalization (often in the form of the discharge summary) with the NICU team facilitates a better understanding of the hospital course. Parents/caregivers should be encouraged to review their infant's hospital course and ask their questions regarding their child's hospital course. Results of diagnostic studies, such as cranial ultrasound examinations, magnetic resonance imaging (MRI) studies, and echocardiograms, including those that require outpatient follow-up, should be reviewed. If possible, subspecialty consultants who will provide follow-up care should be included, and if possible, should meet the family prior to hospital discharge.

●Set expectations for life after NICU discharge – The NICU team should provide the caregivers with a realistic idea of what their home life will be like following NICU discharge, both in the immediate post-discharge period and in the long-term. This includes:

•Expected number and type of primary care provider and specialist visits.

•Anticipated and potential infant developmental and/or growth-related issues.

•Potential for mental health issues (eg, anxiety and/or depression) that some caregivers may experience in the period following NICU discharge. Caregivers should be encouraged to seek help if they feel overwhelmed and should be provided with appropriate resources for support. (See "Care of the neonatal intensive care unit graduate", section on 'Psychosocial issues and family support'.)

Caregivers' competency and understanding

●Competency – Prior to discharge, parents/caregivers must demonstrate competency for the daily care of their infant including:

•Breast- and/or bottle feeding – If bottle feeding, the parents/caregivers should demonstrate competency in preparing the infant's food. If gavage feeding is used, caregivers should demonstrate competency in placing the gavage tube and administering feedings via a pump. If a gastronomy tube is used, caregivers should demonstrate competency in using, cleaning, and caring for the specific type of gastronomy tube their infant has.

•Bathing and dressing.

•Caring for the infant's skin, umbilical cord (if appropriate), and genitalia for male infants.

•Administering and storing medications properly.

•If appropriate, caring for complex medical needs (eg, use of medical equipment, gastrostomy, and/or tracheostomy care).

•Cardiopulmonary resuscitation (CPR) – Parents/caregivers should be offered and encouraged to take a course in infant CPR, especially if their infant has complex medical needs.

●Understanding the infant's condition and care needs – Prior to discharge, parents/caregivers need to demonstrate that they have adequate understanding of the following:

•Normal preterm infant behaviors, including feeding patterns, expected bowel and bladder function, and usual sleep/wake cycles.

•Signs and symptoms of illness that require medical consultation with their primary care provider. These include:

-Not exhibiting hunger or eating less well than baseline

-Sleepier than usual, difficulty in waking, or less active

-More irritable or fussy than usual

-Vomiting or diarrhea

-No signs of urination for >12 hours (dry diaper)

-Changes in stooling, black or bright red stool, or no stool formation >4 days

-Changes in body temperature (rectal temperature >37.8°C [100°F] or an axillary temperature >37.5°C [99.6°F] or <36°C [97°F])

-Change in normal breathing patterns (tachypnea, increased effort of breathing, apnea)

-Hypotonia

-Skin changes, including cyanosis, paleness, mottled skin appearance, or cold

•Safe sleep position and environment – Parents/caregivers are instructed that infants should sleep alone (room sharing is acceptable but not bed-sharing). They should be placed in supine position on a firm and flat sleep surface (eg, a mattress in a safety-approved crib flat) without the use of wedges or sleep positioners. They should not sleep in car seats, swings, or slings. Soft bedding such as pillows, blankets, bumper pads, and toys should be kept out of the infant's sleep area. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Sleep position and environment'.)

•Soothing techniques and coping mechanisms to care for a crying infant – Caregivers should understand the impact of shaking and other physical harm resulting in the "shaken baby syndrome." (See "Infantile colic: Management and outcome", section on 'Soothing techniques'.)

Home environment preparation — The family should have the supplies and equipment needed in the care of their infant at home. The family should be assessed by members of the NICU team for adequate home safety prior to discharge.

●Minimum requirements – At a minimum, families will need the following items:

•Feeding-related supplies – Breast pump, nipples/bottles, formula

•Crib or bassinet that has been approved as a safe sleep environment

•Diapers

•Infant clothes

•Thermometer (axillary or forehead for common use and rectal to be used when directed by a medical provider)

•Smoke and carbon monoxide detectors

•Establishment of local emergency numbers and resources

•Car seat/bed

●Factors that warrant additional resources or interventions – Social work should be involved int the discharge planning process. The social worker should identify and assist with any social or financial needs of the family. Closer follow-up and interventions may be needed for the following situations [26-29]:

•Financial difficulties

•Parental/caregiver mental health issues, especially anxiety or depression

•Substance use disorder

•Inadequate prenatal care

•Teenage pregnancy

•Domestic violence

•Marital instability

Financial difficulties and mental health issues are particularly prevalent. Loss of work and increased health care expenses may burden caregivers with financial challenges. Maternal depression and anxiety are common during the NICU stay and the first year after discharge to home [30,31]. (See "Care of the neonatal intensive care unit graduate", section on 'Psychosocial issues and family support'.)

These factors may be associated with in-family stress as well as child abuse and/or neglect [32]. Prevention is based on identifying at-risk families and providing additional support. Any identified or potential risk factors should be communicated to the medical home as part of the transition of care. (See "Physical child abuse: Recognition".)

●Referrals – Referrals to the following programs can provide additional support and assistance after discharge:

•The Women, Infants, and Children (WIC) program provides financial assistance for nutritional support for mothers and infants.

•Early Intervention Programs (EIPs) provide therapies such as physical and speech therapy and support services at little or no cost to the family/caregivers. Referring infants to local EIPs prior to discharge can help decrease delays in resuming therapies once the infant is out of the hospital.

•Family support groups provide psychosocial support and advice for families.

Recognize and accommodate family needs

Military families — Military families may have unique circumstances that can present challenges in discharge planning. Special efforts should be made to recognize and accommodate the needs of these families.

In the United States, some of these challenges include:

●Deployed parents/caregivers:

•Some deployed parents/caregivers will not be able to return for the birth or hospitalization

•Include the deployed parent/caregiver as much as possible in decision-making

•Define what conditions and circumstances would mandate bringing a deployed parent/caregiver back from deployment

●Military families may not have consistent providers for care. Instead, they may have a team of providers.

●Military families can move frequently and be challenged by the following:

•Change of providers

•Care in multiple locations

•Changing availability of appropriate services based on location

•Finding appropriate services with each relocation

●Medical records:

•Military has electronic records that will follow the family. If a family stays within the military facilities, the records will be available.

•When families are seen in civilian facilities, those records do not automatically get added to the military electronic record. The family must get/keep a copy of their medical records from civilian facilities to provide to their military providers.

•Possible loss/lack of transfer of record when care is mixed between military and civilian providers.

●Military insurance (Tricare) is not universally accepted. It can be a challenge to obtain services, especially mental health services.

●The non-deployed parent/caregiver often provides most of care for the infant and is at high risk for feeling isolated and developing anxiety and depression without usual family and friends close by.

Resources are available for providers and families for affected by parental/caregiver deployment (table 2). (See "Developmental and behavioral implications for military children with deployed caregivers", section on 'Resources'.)

Language barriers — In English speaking countries, families/caregivers with limited English proficiency are at increased risk for not understanding discharge instructions [26]. Support for families with limited English proficiency should include:

●Use appropriately trained medical interpreters for all discharge instructions.

●Verify comprehension of discharge instructions (especially feeding, medication administration, and follow-up appointments) using interpreters.

●Provide adequate opportunities to practice their technical infant care skills under direct supervision using repetition and return demonstrations (eg, teach-back technique) [33].

●Provide supplemental materials in the families’/caregivers’ preferred language when possible.

Other considerations

●Caregivers with disabilities – Parents/caregivers with disabilities should be provided with the supports needed to allow full and active participation in discharge planning. Communication with parents/caregivers with disabilities on their preferred mode of learning is essential [34].

●LGBTQIA+ headed families – LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, and asexual) families should be provided with an inclusive culture. Teaching materials should use gender-inclusive terms, and all caregivers should be provided with discharge planning preparation and planning.

●Families with distinct cultural expectations – Parents/caregivers from other countries or unique culture backgrounds may not understand cultural context and need culturally competent care and discharge planning specifically tailored for them [35].

TRANSITION AND COORDINATION OF CARE — The care of the infant discharged from the neonatal intensive care unit (NICU) should be directed by a physician or other health care professional who is experienced in the care of these high-risk infants and can provide a "medical home" with the ability to provide direct medical care, coordinate care provided by other clinicians and services, monitor growth and development, and work in partnership with the family to assure that all the medical and non-medical needs are met [3]. These criteria are consistent with the recommendations of the American Academy of Pediatrics (AAP) for a medical home.

Hand-off communication — A primary care provider who will provide follow-up care after discharge should be identified by the caregivers early in the infant's hospitalization [3]. The neonatologist or hospital-based clinician should establish contact with this clinician and other care providers prior to discharge and provide the following:

●Hospital course summary – A full review of the infant's hospital course is summarized in a report that is sent to the primary care provider and other specialists who will be involved in the infant's care after discharge [5].

●Follow-up arrangements – Collaborative arrangements is made for primary care, specialty care (eg, pulmonology, cardiology, surgery), and neurodevelopmental follow-up. Neurodevelopmental follow-up in a special program should be arranged for extremely preterm and other high-risk infants [3,36]. (See "Care of the neonatal intensive care unit graduate" and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Approach for follow-up care'.)

●Nutrition – A plan for nutritional support (including lactation support if breastfeeding) and monitoring of growth is established and communicated. (See "Growth management in preterm infants", section on 'Discharge planning' and "Growth management in preterm infants", section on 'After discharge'.)

●Social assessment – Any concern of social risk factors are communicated to the medical home.

Follow-up appointments

●Routine primary care follow-up – An appointment is scheduled for the first primary care/medical home appointment within 48 to 72 hours after discharge. Routine post-discharge follow-up with a phone call to the family by a member of the neonatal intensive care unit (NICU) team can also be a source of comfort and can identify possible transitional problems in the first 48 hours prior to the initial primary care visit. (See 'Transition and coordination of care' above.)

●Specialized NICU follow-up for high-risk infants – Infants who are born extremely preterm or who are at high risk for neurodevelopmental challenges may be referred to a multi-disciplinary follow-up program where more in-depth neurodevelopmental evaluation will be performed. The goal is to identify developmental issues early and connect families with additional resources to enhance the infant's development. (See "Care of the neonatal intensive care unit graduate" and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention".)

If appropriate, future appointments with subspecialty services should also be scheduled. At the time of discharge, support services, such as referral to family support groups, individual therapy, home health nursing visits, and EIP services should be offered to parents/caregivers of the NICU graduate.

ALTERNATIVES TO HOME DISCHARGE — For medical or social reasons, some infants are not discharged home with their parents/caregivers, including:

●Medically unready infants – Infants who require ongoing but less-acute hospital care may be transferred to pediatric rehabilitation hospitals. These may include infants who are maintained on mechanical ventilation or with tracheostomy for whom home care is not possible.

●Infants with incurable terminal conditions – Hospice care focuses on maximizing the quality of life when cure is not expected and may be institutional or home-based. (See "Pediatric palliative care".)

●Inadequate home environment – For infants for whom the home environment is deemed inadequate for the needs of the infant, medical foster care places infants in a home setting with specially trained caregivers. Often, the ultimate goal is to place the infant back with the family as caregivers attain the necessary skills and knowledge and/or as the special needs of the infant decrease.

SUMMARY AND RECOMMENDATIONS

●Comprehensive approach – Infants who are cared for in neonatal intensive care units (NICUs) remain at increased risk for morbidity and mortality following discharge. Comprehensive discharge planning is required to ensure a smooth transition from the NICU to the home, thereby reducing morbidity and mortality after discharge. The components of discharge planning that need to be met prior to discharge are summarized in the table (table 1) and discussed in the following bullets. (See 'Overview' above and 'NICU discharge planning' above.)

●Assess infant readiness – Infant medical discharge readiness includes physiologic stability of the infant, including normal maintenance of body temperature and cardiorespiratory function, feeding, and growth. (See 'Medical readiness' above.)

●Routine predischarge assessments and vaccinations

•Screening – Routine newborn screening should be completed before discharge. This includes the following screening tests, most of which are discussed in detail separately:

-The newborn "blood spot" screening panel (see "Overview of newborn screening")

-Hearing screening (see "Screening the newborn for hearing loss")

-Screening for retinopathy of prematurity (if appropriate) (see "Retinopathy of prematurity (ROP): Risk factors, classification, and screening", section on 'Screening')

-Follow-up neuroimaging for infants with identified intraventricular hemorrhage or other risk factors (see "Germinal matrix and intraventricular hemorrhage (GMH-IVH) in the newborn: Risk factors, clinical features, screening, and diagnosis", section on 'Screening' and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Selective MRI imaging')

-Other pre-discharge follow-up tests may be warranted depending on the infant’s initial screening results and NICU course. (See 'Routine discharge screening' above.)

•Car seat/bed testing – For all preterm infants (<37 weeks gestation) and for term infants with risk factors for airway obstruction and/or bradycardia (eg, Down syndrome, micrognathia, recent cardiac surgery), we suggest screening for cardiorespiratory compromise with a car seat/bed test prior to discharge (Grade 2C). (See 'Car seat/bed use' above.)

•Vaccinations and prophylaxis – Prior to discharge, medically stable preterm infants should receive full immunization based upon their chronological age consistent with the schedule and dose recommended for healthy full-term infants (figure 1). (See "Standard immunizations for children and adolescents: Overview".)

In addition, respiratory syncytial virus (RSV) prophylaxis should be given to all eligible infants, as discussed separately. (See "Respiratory syncytial virus infection: Prevention in infants and children".)

●Support caregivers – Clinicians should ensure parent/caregiver readiness and acquisition of the skills and knowledge required for home care of their infant. (See 'Caregivers' competency and understanding' above.)

The home environment should be prepared with procurement of the necessary items required for the daily care of the infant. The clinical team should evaluate the family's social, financial, and mental health needs, and if needed, make referrals to services at the time of discharge. (See 'Home environment preparation' above.)

●Identify patients with special needs – Some individuals have special needs that warrant additional support and planning or require alternatives to home discharge. (See 'Complex medical needs' above and 'Alternatives to home discharge' above.)

●Identify an outpatient clinician – A primary care pediatric provider with expertise in caring for infants discharged from the NICU who will provide a medical home after discharge should be selected. Ongoing communication with the primary care provider during hospitalization and a summary of the NICU course will facilitate transition of care at discharge. (See 'Transition and coordination of care' above.)

●Plan follow-up – The initial appointment with the primary care pediatric provider provides is scheduled within 48 to 72 hours after discharge is scheduled. If appropriate, follow-up appointments are scheduled for specialty services and referrals are made for community services. (See 'Follow-up appointments' above.)