Care of the neonatal intensive care unit graduate

INTRODUCTION — Advances in neonatal intensive care have improved the survival of high-risk preterm and critically ill term infants. (See "Preterm birth: Definitions of prematurity, epidemiology, and risk factors for infant mortality", section on 'Trends over time'.)

However, infants cared for in the neonatal intensive care unit (NICU) represent a vulnerable population, and they continue to need comprehensive clinical care after discharge.

This topic will review the care of the NICU graduate, focusing on the role of the primary care clinician. The discussion focuses on preterm infants who represent the majority of NICU graduates. Discharge planning, criteria for NICU discharge, and neurodevelopmental follow-up after NICU discharge are discussed separately. (See "Discharge planning for high-risk newborns" and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention".)

ROLE OF THE PRIMARY CARE PROVIDER — The primary care provider plays a key role in providing optimal continuity of treatment for NICU graduates by coordinating transition of care from the neonatologist, delivering direct medical care, and facilitating ongoing care for specific medical conditions of the infant by subspecialists and other health professionals [1-3].

The responsibility of overseeing the infant's medical care, communicating with parents/caregivers, and coordinating subspecialty care is shared between the primary care provider and the neonatologist. Continuity of care at the time of discharge from the NICU is critical [4]. The primary care clinician's role is:

●To communicate with the neonatologist and family during the NICU course of the infant; especially when the infant is close to discharge. Ongoing communication facilitates the transfer of medical information (patient's medical history, medications, and technologic needs); allows collaborative arrangements for follow-up with primary, subspecialty, and neurodevelopmental care; and determines the appropriate timing of transfer and discharge home. For the parents/caregivers, contact with both the neonatologist and primary care provider decreases confusion, anxiety, and uncertainty regarding transfer of care. (See "Discharge planning for high-risk newborns".)

●To assume primary responsibility for outpatient medical care upon discharge from the NICU.

●To coordinate ongoing care among subspecialists and other health care professionals. The primary care provider should be aware of and be able to utilize community services for both the patient and the parents/caregivers as needed.

●To provide support to the parents/caregivers, including resources and information to help them foster the infant's development. This includes optimizing developmental stimulation in the home with early intervention services and early language exposure [5,6].

INITIAL VISIT — The initial visit should occur within 48 to 72 hours after discharge from the hospital. The visit includes:

●Review NICU course – This includes information on:

•Growth parameters – Growth curve during the birth hospitalization and head circumference, length and weight at discharge. (See "Growth management in preterm infants".)

•Clinical status and complications – Specific medical issues for the infant should be documented including the status at discharge.

•Nutrition – Type of feeding, volume and frequency of feeds, and most recent nutrition-related lab studies (hematocrit, reticulocyte count, and serum levels of calcium, phosphate, and alkaline phosphatase).

•Development – Assessment of infant's neurodevelopmental status, documentation of any abnormalities noted in muscle tone, reflexes, clonus, or visual attention.

•Laboratory results – Review of most recent and pending lab studies. These may include:

-Results of newborn screening, including those that resulted while the infant was in the NICU, and any repeat tests that were pending at the time of discharge (see "Overview of newborn screening")

-Laboratory tests to evaluate nutritional status and bone health (see "Growth management in preterm infants", section on 'Laboratory studies' and "Management of bone health in preterm infants", section on 'Laboratory monitoring')

-Other pending laboratory tests (eg, cytomegalovirus testing, genetic testing, maternal thyroid antibody studies)

•Current medications and medical equipment.

•Immunization record.

•Neonatal neurosensory screening including:

-Routine newborn screening for hearing loss (see 'Hearing' below and "Screening the newborn for hearing loss")

-Cranial imaging (see "Retinopathy of prematurity (ROP): Risk factors, classification, and screening", section on 'Screening')

-Ophthalmologic assessment (see 'Vision' below and "Retinopathy of prematurity (ROP): Risk factors, classification, and screening", section on 'Screening')

●Review progress since discharge – Evaluation of the infant's progress since discharge, including growth and assessment of the patient's specific medical problems and a detailed review of feeding and sleep environment. Provide further guidance for nutrition, especially if there is concern about weight gain, and safe sleep practice, including avoidance of non-approved sleeping devices. (See "Growth management in preterm infants", section on 'After discharge' and "Growth management in preterm infants", section on 'Interventions' and "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Sleep position and environment'.)

●Address new concerns – Address any new concerns the parents/caregivers have. The primary care provider should confirm that the family understands the infant's medical diagnoses, and any medications (including dosage, mode of administration, and schedule) and equipment required for the infant's care. During this visit, the primary care clinician should also check on how the family is handling the responsibility and stress of bringing an infant home from the NICU. (See 'Psychosocial issues and family support' below.)

●Review upcoming appointments – Review the patient's future appointments with subspecialty services (including the reason for referral and anticipated focus for each subspecialty visit) and the schedule of subsequent primary care visits and hearing and vision screening. Emphasize which appointments need to be rescheduled immediately, if missed (eg, follow-up of active retinopathy of prematurity or diagnostic hearing evaluation following a failed NICU hearing screen). (See 'Screening' below.)

SUBSEQUENT VISITS — Subsequent visits focus on routine primary care (eg, immunization and growth), general care targeted for NICU graduates (ie, hearing, vision and neurodevelopment screening), and management of specific medical problems of the individual patient. The schedule depends on the patient's medical status but in general, primary care visits will be more frequent in the beginning (eg, every one to two weeks) to monitor and establish adequate growth.

Growth and nutrition

Type of feeds — It is the goal for NICU graduates, as is true for all infants, to receive maternal breast milk for as long as the mother can provide it during the first year of life. (See "Infant benefits of breastfeeding".)

Some preterm infants will be discharged with fortified breast milk or supplemental formula feeds to ensure adequate caloric intake for growth. However, other NICU graduates will be discharged on formulas when breast milk is not available, including alternate formulas for infants with intestinal surgery, necrotizing enterocolitis, or other feeding intolerance.

Transitional preterm infant formula has increased caloric density, calcium, and phosphorus. Other formulas have alternate carbohydrate ingredients, hydrolyzed proteins, and medium-chain triglycerides, and some are elemental for optimal ease of digestion. If an infant is discharged home with feeding other than breast milk or term formula, the primary provider should know the indication and planned duration of its use and instruct parents accordingly.

Monitoring growth — NICU graduates are at risk for inadequate growth due to their increased caloric and nutrient requirements.

After discharge from the hospital, patients require frequent monitoring of their growth and overall nutritional intake. Greater weight gain before reaching term equivalent appears to be associated with improved neurodevelopmental outcome [7]. If growth is inappropriate (inadequate or excessive), the infant's nutrition is evaluated, and corrective measures (eg, changes in the composition, volume, and caloric density of the feeds, and mode of feeding) are initiated as needed. In addition, evaluation for contributing conditions (eg, gastroesophageal reflux or feeding difficulties) may be performed. Even if growth is adequate from the last visit, it is important to inquire about frequency of feeding and the length of each feeding session at each visit.

For infants who are receiving supplemental nutrition and/or diuretic therapy, follow-up laboratory testing may be needed including hematocrit, reticulocyte count, electrolytes, calcium, alkaline phosphatase, and vitamin D levels.

Monitoring the growth and nutritional management of the preterm NICU graduate are discussed in greater detail separately. (See "Growth management in preterm infants", section on 'Monitoring of growth' and "Growth management in preterm infants", section on 'Interventions' and "Gastroesophageal reflux in premature infants" and "Gastroesophageal reflux in infants".)

Feeding difficulties — Feeding difficulties contribute to poor growth and are more common among children who were extremely preterm (EPT, gestational age [GA] ≤28 weeks) due to swallowing problems, oral motor dysfunction, hypersensitivity, delayed feeding skill development, and behavioral problems (oral aversion) (see "Neonatal oral feeding difficulties due to sucking and swallowing disorders"). A study that followed children into school age found that feeding problems continued to be present at six years of age [8]. When difficulties are identified, prompt referral to a feeding specialist for direct oral motor feeding therapy can avoid growth failure and pathologic feeding practices.

Infants who are discharged home on tube feedings (nasogastric or via gastrostomy tube) are at risk for complications, including need for emergency department visits and rehospitalization. They require specialized support from an interdisciplinary team that includes gastrointestinal specialists, nutritionists, oral motor feeding specialists, and feeding behavioral specialists [9,10]. Family support from other families who have experience with tube feedings and transitions from tube feeding is also a valuable resource. (See "Overview of enteral nutrition in infants and children", section on 'Administration'.)

Immunizations

Routine vaccinations and prophylaxis — Preterm infants are at increased risk for vaccine-preventable infections. Immunization in the preterm infant results in a protective antibody response [11-19]. Medically stable preterm infants should receive full immunization based upon their chronological age consistent with the schedule and dose recommended for full-term infants (figure 1). (See "Standard immunizations for children and adolescents: Overview", section on 'Infants and children'.)

Immunizations may have been started in the NICU, but delays in immunization are common, especially in unstable infants. Thus, the NICU care team should provide complete detailed records of any immunizations given in the NICU to the primary care clinician.

Specific vaccinations and immunoprophylaxis practices are briefly summarized here; detailed discussion is provided in separate topic reviews:

●Hepatitis B (HBV) – HBV immunization is administered to preterm infants according to the HBsAg status of the mother and the birth weight (BW) of the infant. The approach is summarized in the figures (algorithm 1A-B) and discussed in detail separately. (See "Hepatitis B virus immunization in infants, children, and adolescents".)

●Influenza – Preterm infants are at high risk for complications from seasonal influenza virus infection and should receive influenza vaccine once they are ≥6 months old. Family members and household contacts should also receive the influenza vaccine. Additional details are provided separately. (See "Seasonal influenza in children: Prevention with vaccines".)

●Coronavirus disease 2019 (COVID-19) – COVID-19 vaccine is recommended for all infants ages six months and older. Additional details are provided separately. (See "COVID-19: Vaccines", section on 'Children aged six months to four years'.)

●Respiratory syncytial virus (RSV) – Preterm infants, especially those with bronchopulmonary dysplasia (BPD), are at increased risk for morbidity and mortality from RSV infection. RSV prophylaxis for the infant is discussed in detail separately. (See "Respiratory syncytial virus infection: Prevention in infants and children".)

The role of maternal RSV vaccination to prevent neonatal RSV disease is also discussed separately. (See "Immunizations during pregnancy", section on 'Respiratory syncytial virus'.)

●Pertussis – All parents and other care providers of NICU graduates should check with their primary care provider to see if they should receive vaccination with the combination tetanus toxoid, reduced, diphtheria toxoid and acellular pertussis (Tdap) vaccine. (See "Tetanus-diphtheria toxoid vaccination in adults", section on 'Indications for Td or Tdap vaccination in adults'.)

●Rotavirus – Rotavirus vaccines can be administered to preterm infants who are clinically stable and at least six weeks old. This is discussed separately. (See "Rotavirus vaccines for infants", section on 'Preterm infants'.)

Administration — In preterm infants, the site for administering intramuscular vaccines is the anterolateral thigh. The length of the needle is based upon the muscle mass of the infant and may be less than the standard 7/8 to 1 inch length normally used for term infants.

Screening — NICU graduates are at increased risk for hearing, vision, and neurodevelopmental problems. These conditions often are identified in the NICU; however, in some cases that are recognized only after discharge. As a result, infants require additional routine follow-up screening for these potential problems even if screening was performed during the birth hospitalization.

Hearing — The risk of clinically significant hearing loss is considerably higher in preterm infants admitted to the NICU compared with healthy term neonates [20]. (See "Hearing loss in children: Etiology", section on 'Prematurity'.)

●Initial screening – Infants who require NICU care are at increased risk for sensorineural hearing loss (SNHL), including auditory neuropathy/dyssynchrony (AN/AD). For this reason, it is recommended that all NICU patients undergo hearing screening with automated auditory brainstem response (AABR) during birth hospitalization (algorithm 2). Screening with otoacoustic emissions is not adequate for this population since it does not detect AN. This issue is discussed in greater detail separately. (See "Screening the newborn for hearing loss", section on 'Neonatal intensive care unit'.)

●Infants who fail the hearing screen – NICU patients who fail the hearing screen typically undergo confirmatory audiologic testing prior to discharge. If hearing loss is confirmed, the infant should be referred for multidisciplinary pediatric audiologic care. If formal audiology testing was not performed during the hospitalization, it should be completed as soon as possible after discharge since language outcomes for children with hearing loss are improved with early intervention. (See "Screening the newborn for hearing loss", section on 'Infants who fail two-stage screening'.)

●Infants who pass the hearing screen – After NICU discharge, all infants should receive ongoing surveillance of communicative development beginning at two months of age during well-child visits in the medical home. Any infant identified with delays should be referred for prompt audiologic evaluation. (See "Hearing loss in children: Screening and evaluation", section on 'Screening for hearing loss in children'.)

If concerns are identified through routine surveillance or if the infant has additional risk factors for hearing loss (table 1), follow-up formal audiologic evaluation should be performed by nine months of age to ensure timely diagnosis and referral. (See "Screening the newborn for hearing loss", section on 'Infants with risk factors for hearing loss'.)

Vision — NICU graduates are at increased risk for retinopathy of prematurity (ROP) and other vision problems.

●ROP – For preterm neonates at risk for ROP (those who are ≤30 weeks GA and/or birth weight [BW] ≤1500 g), initial screening for ROP is performed during the NICU hospitalization. The need and timing for follow-up is determined by the findings on the initial examinations and whether treatment was required. Additional details are provided separately. (See "Retinopathy of prematurity (ROP): Risk factors, classification, and screening", section on 'Screening'.)

●Other vision problems – NICU graduates are at increased risk for other eye problems such as strabismus, refractory errors (eg, myopia, anisometropia), amblyopia, cataracts, and cerebral vision impairment (see 'Vision problems' below). For this reason, we suggest that all preterm neonates requiring NICU care be examined by an experienced pediatric eye care specialist at 9 to 12 months and again at two to three years of age. All NICU graduates should also have routine vision screening performed by the primary care provider. (See "Vision screening and assessment in infants and children", section on 'Vision screening'.)

Neurodevelopment — NICU graduates are at increased risk for neurodevelopmental disorders compared with healthy term infants. The risk increases with decreasing GA. (See "Long-term neurodevelopmental impairment in infants born preterm: Epidemiology and risk factors", section on 'Risk of NDI by gestational age'.)

The primary care clinician should encourage and endorse family developmental stimulation in the home through activities such as reading, singing, and frequent conversation [5,6]. The primary care provider also plays a crucial role in identifying and referring at-risk infants for further evaluation and early intervention services [21,22].

Developmental surveillance is recommended at every primary care visit. Developmental screening using evidence-based tools should be performed at 9, 18, and 30 months. The risk of autism is increased in preterm infant and autism-specific screening is recommended at ages 18 and 24 months as well. (See "Developmental-behavioral surveillance and screening in primary care" and "Autism spectrum disorder in children and adolescents: Surveillance and screening in primary care", section on 'Approach to ASD surveillance and screening'.)

Additional details regarding neurodevelopmental risk assessment, follow-up care, and early intervention for preterm infants are provided separately. (See "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Approach for follow-up care'.)

Psychosocial issues and family support — Bringing home a NICU graduate can be challenging to parents because of social, financial, and psychological stresses [23]. There is evidence that racial and ethnic disparities occur in referral and participation in support services such as early intervention [24]. Primary care providers should be aware of social and racial disparities in follow-up care and should work to counter them.

●Parental depression and anxiety – The incidence of parental depression and anxiety is high both during the infant's NICU stay and especially in the months after discharge to home. Screening for postpartum depression should be included in the initial post-discharge visits. (See "Postpartum unipolar major depression: Epidemiology, clinical features, assessment, and diagnosis", section on 'Screening'.)

Clinicians should be attentive to the additional stresses in parents of NICU graduates and provide care and assistance to parents. Support services, such as referral for individual therapy, home health nursing visits, early child interventions services, and support groups, should be offered to parents of the NICU graduate.

●Vulnerable child syndrome – NICU graduates are at-risk for the vulnerable child syndrome, which is characterized by parenteral overprotection including, abnormal separation difficulties, overindulgence, sleep problems, and long-term psychosocial problems (eg, behavioral issues, poor peer relationships, and poorer developmental outcome) [25]. Such behavior from parents can lead to conflicts within the family, as other siblings and spouses may feel neglected. Clinicians should monitor for this situation and help reduce its occurrence by providing parents with frequent reassurance and counseling as needed.

Daycare — Some NICU graduates may be too unstable initially to be placed in daycare out of the home. Before sending to daycare, parents should make sure the infant is stable on room air/oxygen and feeding is on a routine schedule. Licensed daycare personnel should be trained in cardiopulmonary resuscitation. Patients should be kept out of daycare if they are at high risk for infection, especially if they are being discharged home in the fall or winter months when seasonal viruses are more prevalent. NICU graduates with BPD are at increased risk for respiratory morbidities with an increased risk of emergency room visits and use of systemic corticosteroids and antibiotics [26]. (See "Complications and long-term pulmonary outcomes of bronchopulmonary dysplasia", section on 'Respiratory disorders associated with bronchopulmonary dysplasia'.)

Risk of sudden infant death syndrome (SIDS) — Preterm infants are at a greater risk for SIDS compared with term infants. It is essential to provide education and counseling to parents/caregivers about the importance of safe sleep practices, including infant sleeping in the supine position. Strategies to reduce the risk of SIDS are discussed separately. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Prevention'.)

MEDICAL CARE OF SPECIFIC CONDITIONS — The primary care clinician should be familiar with the more common medical problems that occur or may develop in the NICU graduate and be able to coordinate subspecialty care when needed. Common medical problems include bronchopulmonary dysplasia (BPD), apnea of prematurity, sudden infant death syndrome (SIDS), gastro-esophageal reflux (GER), anemia, osteopenia, and neurodevelopmental disorders. A summary of these disorders is presented here with more detailed discussions presented in separate topics.

BPD and other respiratory conditions — The most common respiratory problem in preterm infants is bronchopulmonary dysplasia (BPD). Management of BPD after NICU discharge is discussed separately. (See "Complications and long-term pulmonary outcomes of bronchopulmonary dysplasia", section on 'Management after neonatal intensive care unit discharge'.)

In addition, NICU graduates are at risk for reactive airway disease and respiratory infections especially respiratory syncytial virus [27,28]. (See "Bronchiolitis in infants and children: Clinical features and diagnosis" and "Risk factors for asthma", section on 'Prematurity'.)

Apnea of prematurity — Apnea of prematurity, a developmental condition, is a direct consequence of immature respiratory control and typically resolves before 37 weeks postmenstrual age (PMA). However, some infants will continue to have apnea and may be discharged home on caffeine therapy and/or with home cardiorespiratory monitoring. Timing of when to stop caffeine or discontinue monitoring varies among clinician practices and will depend on many factors, including postmenstrual age and the presence of symptoms. (See "Management of apnea of prematurity".)

Gastroesophageal reflux (GER) — GER is common in preterm infants and in those with BPD, neurologic impairment, or congenital defects (eg, tracheo-esophageal fistula or diaphragmatic hernia). Complications associated with GER in the preterm infant include poor weight gain due to decreased caloric intake, apnea and bradycardia, aspiration, choking, esophagitis, laryngospasm, and discomfort. The details of evaluation and management of GER in the preterm infant are discussed separately. (See "Gastroesophageal reflux in premature infants".)

Anemia — Anemia is often a consequence of blood loss from phlebotomy for laboratory testing in the NICU. In addition, preterm and low birth weight (BW) infants develop anemia due to impaired erythropoietin production that occurs earlier and is more severe than the physiologic anemia seen in healthy term infants. The onset and severity of anemia of prematurity is inversely proportional to gestational age (GA) and also depends on timing of last transfusion in the NICU. Preterm infants will require monitoring of hematocrit and reticulocyte count as well as prolonged iron supplementation. The clinical features and management of anemia of prematurity including iron supplementation are discussed separately. (See "Anemia of prematurity (AOP)".)

Vision problems — Preterm infants are at risk for vision problems, including retinopathy of prematurity (ROP), amblyopia, strabismus, myopia, and anisometropia [29-34]. Periodic ophthalmologic evaluations are required in the first three years. We suggest that all preterm infants undergo examination by an ophthalmologist at 9 to 12 months of age and again at two to three years of age. (See "Vision screening and assessment in infants and children".)

Follow-up and management of specific eye disorders are discussed in separate topic reviews:

●ROP – Treatment and follow-up for ROP are discussed separately. (See "Retinopathy of prematurity (ROP): Treatment and prognosis", section on 'Follow-up'.)

●Strabismus – Strabismus refers to misalignment of the eyes. Preterm infants have an approximately four- to five-fold increased risk of strabismus compared with term infants [35]. The evaluation and management of strabismus in infants and children are discussed separately. (See "Evaluation and management of strabismus in children".)

●Anisometropia – Anisometropia refers to asymmetric refractive error between the two eyes. Children with anisometropia are at risk of developing amblyopia. Treatment for anisometropia typically consists of vision correction with glasses or contact lenses. (See "Refractive errors in children", section on 'Anisometropia'.)

●Other refractive errors – Other types of refractive errors, particularly myopia, are also more frequent in preterm than term infants [36,37]. Low GA and severe ROP increase the risk. Vision is corrected with glasses or contact lenses. (See "Refractive errors in children", section on 'Myopia'.)

●Amblyopia – Amblyopia is the functional reduction in visual acuity caused by abnormal visual development early in life. It is a secondary consequence of a primary vision disturbance (eg, strabismus, anisometropia, cataract) during infancy or early childhood. Amblyopia can be treated if it is detected early (ideally before five years of age). The evaluation and treatment of amblyopia are discussed in detail separately. (See "Amblyopia in children: Classification, screening, and evaluation" and "Amblyopia in children: Management and outcome".)

●Cataracts – Cataracts are uncommon in children but have been reported as a rare complication of treatment for ROP with laser therapy or anti-vascular endothelial growth factor (anti-VEGF) therapy [38]. (See "Cataract in children" and "Retinopathy of prematurity (ROP): Treatment and prognosis", section on 'First-line therapies'.)

Bone health — Preterm infants are at risk for osteopenia and fractures due to rapid growth and the loss of accretion of calcium and phosphorus during the third trimester of pregnancy. Infants requiring treatment with prolonged parenteral nutrition, diuretics, and/or glucocorticoids are at particularly high risk. After discharge, breastfed infants may require vitamin D supplementation and monitoring of bone health with serum alkaline phosphatase levels. Calcium and/or phosphorus supplementation may also be necessary depending on alkaline phosphatase levels. Formula-fed infants generally do not require monitoring for bone health as adequate nutrients are provided in the formula. (See "Management of bone health in preterm infants", section on 'Subsequent management'.)

Neurodevelopment — Compared with healthy term infants, NICU graduates are at increased risk for neurodevelopmental disorders, including:

●Delayed motor development and cerebral palsy (see "Cerebral palsy: Evaluation and diagnosis")

●Cognitive impairment (see "Intellectual disability (ID) in children: Clinical features, evaluation, and diagnosis")

●Language delay (see "Evaluation and treatment of speech and language disorders in children")

●Learning disabilities (see "Specific learning disorders in children: Clinical features" and "Specific learning disorders in children: Evaluation")

●Autism spectrum disorder (see "Autism spectrum disorder in children and adolescents: Evaluation and diagnosis")

●Other behavioral and mental health disorders (eg, attention deficit hyperactivity disorder) (see "Attention deficit hyperactivity disorder in adults: Epidemiology, clinical features, assessment, and diagnosis")

All NICU graduates should undergo routine neurodevelopmental surveillance, as discussed above. (See 'Neurodevelopment' above.)

Risk factors for neurodevelopmental disabilities in this population and the approach to risk assessment and neurodevelopmental follow-up care for these infants are discussed in detail separately. (See "Long-term neurodevelopmental impairment in infants born preterm: Epidemiology and risk factors" and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention".)

Orthopedic disorders — Torticollis and positional plagiocephaly are seen more commonly in preterm infants. This is most commonly related to in utero and postnatal positioning and can also be related to injury to the sternocleidomastoid muscle with shortening of the muscle. Infants identified with torticollis should be referred for physical therapy for guidance with stretches and positioning. Positional plagiocephaly can be treated by changing the infant's position, though custom-fitted cranial molding orthoses (helmets) are used in some cases. This is discussed separately. (See "Congenital muscular torticollis: Management and prognosis" and "Overview of craniosynostosis", section on 'Positional flattening (positional plagiocephaly)'.)

Hernias — Both umbilical and inguinal hernias are common in preterm infants.

●Umbilical hernias – Umbilical hernias are reported to occur in up to 75 percent of preterm infants with BW between 1000 to 1500 g [39]. The hernia is more noticeable when the infant is crying or straining (eg, bowel movement). Most will resolve spontaneously by two years of age. Surgery is usually not necessary unless there are signs of incarceration. (See "Care of the umbilicus and management of umbilical disorders", section on 'Umbilical hernia'.)

●Inguinal hernia – Inguinal hernias are more common in preterm than term infants and preterm infants are at increased risk of developing incarcerated hernia [40-42]. Hernias are often detected in the NICU but can occur after discharge. If detected in the NICU, repair may be delayed until after discharge when the infant is larger and medically stable. If not repaired, surgical follow-up should be arranged by the NICU team. If an inguinal hernia is detected after discharge, referral to pediatric surgery should be made. Parents should be instructed in the signs and symptoms of incarceration and how to reduce the hernia daily until repaired [43]. (See "Inguinal hernia in children".)

Other surgical issues — Some NICU graduates may undergo surgery during the NICU hospitalization. Common examples include surgical bowel resection for treatment necrotizing enterocolitis, gastrostomy tube placement, tracheostomy tube insertion, placement of a ventriculoperitoneal shunt to treat hydrocephalus, and surgery to correct or palliate congenital heart disease. Parents should be instructed on postoperative care when the infant is discharged to home. Coordination with surgical services and post-discharge follow-up should be arranged by the NICU and surgical teams.

Dental problems — Preterm infants and term infants who have been critically ill are at increased risk of developing dental problems. These include enamel hypoplasia with increased risk for dental caries, delayed tooth eruption, tooth discoloration, palatal groove, and tooth malalignment [44,45]. Infants with a history of prolonged intubation can have v-shaped palates, posterior cross bites, deformed incisal edges, and missing teeth [41]. (See "Preventive dental care and counseling for infants and young children".)

Child abuse — Preterm infants are at increased risk of physical abuse, probably because of excessive irritability and increased family stress after prolonged hospitalization. In addition, preterm birth is more likely among mothers with poor prenatal care, drug use, and domestic violence. Primary care providers need to be aware of this increased risk and evaluate any suspicion of neglect or abuse. (See "Physical child abuse: Recognition", section on 'Young age'.)

HOSPITAL READMISSIONS — NICU graduates, including both term and preterm infants, are at increased risk for readmissions to the hospital with reported rates of readmission from 5 to 10 percent within the first 30 days after discharge [4,46]. Preterm infants are two to three times more likely to be readmitted during the first year of life compared with term infants [47,48]. Population-based studies have shown that the risk of readmission increases with decreasing gestational age (GA), with the highest rates occurring in NICU graduates born extremely preterm EPT; (GA <28 weeks) [48-50]. Hospitalization rates are also higher among infants with neonatal morbidities (eg, necrotizing enterocolitis [NEC] requiring surgery, grade 3 or 4 intraventricular hemorrhage [IVH], bronchopulmonary dysplasia [BPD], and retinopathy of prematurity [ROP]) [51].

The risk of rehospitalization persists throughout childhood and adolescence [48,51,52]. This was illustrated in a population-based study that analyzed data of >1,000,000 births in England from 2005 and 2006 which were linked to follow-up records through the first ten years of age [48]. Hospitalization rates during the first year after birth were more than three-fold higher in children born EPT compared with those born at term (69 versus 20 percent). Children born EPT continued to have a higher likelihood of hospitalization at age 3 to 4 years (41 versus 15 percent), but the difference was less pronounced by age 7 to 10 years (25 versus 12 percent).

Th most common causes for rehospitalization include infections (especially respiratory syncytial virus and other respiratory viral infections), respiratory problems (wheezing, asthma), feeding difficulties with inadequate growth, and surgical issues [4,48,53-56]. Parents should be made aware of the increased potential of readmissions for their preterm infant.

Reported risk factors for rehospitalization include [48,52,56-58]:

●GA (the risk increases with decreasing GA)

●Neurologic disorders (eg, seizure disorder, cerebral palsy, IVH, hydrocephalus)

●BPD or requiring required mechanical ventilation during the NICU stay

●Other neonatal morbidities (eg, surgical NEC, ROP)

●Airway abnormalities (eg, subglottic stenosis)

Hospitalization rates for preterm infants remain higher compared with term infants throughout the first six years of life [52].

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics topics (see "Patient education: Retinopathy of prematurity (ROP) (The Basics)")

●Basics topics (see "Patient education: What to expect in the NICU (The Basics)")

●Basics topics (see "Patient education: When a baby is born premature (The Basics)")

SUMMARY AND RECOMMENDATIONS

●Role of the primary care provider – Advances in neonatal care have improved the survival of high-risk preterm and critically ill term infants. However, infants cared for in the neonatal intensive care unit (NICU) are a vulnerable population and they continue to need comprehensive clinical care after discharge. The primary care clinician plays a key role in providing optimal continuity of care by coordinating transition of care from the NICU, delivering direct medical care, and facilitating ongoing care of the infant with subspecialists and other health professionals. (See 'Role of the primary care provider' above.)

●Initial visit – The initial primary care outpatient visit is scheduled within 48 to 72 hours after hospital discharge. It includes (see 'Initial visit' above):

•Reviewing the infant's NICU course, current medications, and medical equipment

•Reviewing recent and pending laboratory results

•Assessing the infant's general health and progress since discharge (eg, weight gain)

•Assessing the parents'/caregivers' concerns and how they are handling the responsibility and stress of caring for the infant

•Confirmation of future appointments

●Subsequent visits – The timing and schedule for subsequent visits vary, depending on the patient's medical status. In general, primary care visits will be more frequent in the beginning (eg, every one to two weeks) to monitor and establish adequate growth. In addition to other aspects of routine pediatric primary care, subsequent visits should include the following (see 'Subsequent visits' above):

•Monitoring growth – If growth is inappropriate (inadequate or excessive), the infant's feeding and intake should be evaluated and addressed as warranted (eg, modify the composition, volume, and/or caloric density of the feeds, or mode of feeding). In addition, an assessment for contributing conditions (eg, gastroesophageal reflux or feeding difficulties) may be appropriate. These issues are discussed in greater detail separately. (See 'Growth and nutrition' above and "Growth management in preterm infants" and "Neonatal oral feeding difficulties due to sucking and swallowing disorders".)

•Immunizations and immunoprophylaxis – Medically stable preterm infants should receive full immunization based upon their chronological age consistent with the schedule and dose recommended for full-term infants, as summarized in the figure (figure 1) and discussed in detail separately. (See "Standard immunizations for children and adolescents: Overview", section on 'Infants and children'.)

Respiratory syncytial virus (RSV) prophylaxis is discussed separately. (See "Respiratory syncytial virus infection: Prevention in infants and children".)

In preterm infants, the site for administering intramuscular vaccines is the anterolateral thigh. The length of the needle is based upon the muscle mass of the infant and may be less than the length normally used for term infants. (See 'Administration' above.)

•Screening – Screening for hearing, vision, and neurodevelopmental disorders is necessary because of the high rate of abnormalities for the NICU graduate. These infants require additional routine follow-up screening for these potential problems even if screening was performed during the birth hospitalization. (See 'Screening' above.)

•Counseling regarding risk of SIDS – Preterm infants are at a greater risk for sudden infant death syndrome (SIDS) compared with term infants. It is essential to provide education and counseling to parents/caregivers about the importance of safe sleep practices, including infant sleeping in the supine position. Strategies to reduce the risk of SIDS are discussed separately. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies".)

●Management of specific complications – Clinicians who care for NICU graduates should be familiar with common medical problems in this population. Coordination of care between multiple specialists, when needed, is important to ensuring optimal care. Common medical problems in this population include bronchopulmonary dysplasia (BPD), apnea of prematurity, gastroesophageal reflux (GER), and anemia of prematurity. Other complications are listed above. (See 'Medical care of specific conditions' above.)

●Hospital readmissions – NICU graduates are at risk for hospital readmissions. The rate of rehospitalization increases with decreasing GA and with increasing number of significant neonatal morbidities (eg, BPD, neurologic impairment). (See 'Hospital readmissions' above.)