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'). Infants who are discharged from the neonatal intensive care unit (NICU) require continued comprehensive clinical care and coordination of all subspecialty care, which is provided by the primary care provider clinician.
This topic will review the care of the infant provided by the primary care clinician after being discharged from the NICU. The discussion focuses on preterm infants who represent the majority of NICU graduates. Criteria for discharge and planning for discharge are presented separately. (See "Discharge planning for high-risk newborns".)
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].
To help facilitate and optimize the quality of care for these infants, the American Academy of Pediatrics (AAP) has developed guidelines for the primary care provider in the management of these high-risk infants [4,5]. We concur with these guidelines that highlight the shared responsibility of the care of the infant between the primary care provider and the neonatologist, the need for effective communication with the family and other professionals involved in the care of the infant, the importance of continuity of care at the time of discharge from the NICU, and the role of the primary care clinician to provide direct care for these infants. The primary care clinician:
●Communicates with the neonatologist and family during the NICU course of the infant; especially important when the infant is getting close to being ready for discharge to home or transfer to a Level 2 facility. 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 family, 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".)
●Provides primary medical care when the infant no longer requires intensive care treatment either as an outpatient upon discharge home or as an inpatient upon transfer back to the referring hospital.
●Is knowledgeable of existing medical problems and has the ability to detect new problems that are commonly seen in the neonate after discharge from the NICU. As examples, preterm infants are at increased risk for hearing loss, progression of retinopathy of prematurity and subsequent vision problems, and developmental delay. As a result, these infants may require additional hearing and ophthalmologic screening, and neurodevelopmental evaluation beyond that provided in routine pediatric care.
●Coordinates 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 family as needed.
●Provides psychosocial support to the family and provides resources and information to enhance neurodevelopmental support for the infant. This includes optimizing developmental stimulation in the home with early intervention services and early language exposure [6,7].
INITIAL VISIT — The initial visit is scheduled within 48 to 72 hours after discharge from the hospital. The visit includes:
●Review of the infant's NICU course, current medications, and medical equipment. 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 – The median and range of respiratory and heart rate, percent oxygen saturation on room air, and blood pressure during hospitalization and at discharge should be noted. 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.
•Immunization record.
•Neonatal screening including routine newborn screening for hearing, cranial imaging, and ophthalmologic assessment.
●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'.)
●Time to listen and address the family's concerns. 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 in his/her care. During this visit, the clinician should also check on how the family is handling the responsibility and stress of bringing an infant home from the NICU.
●Review the patient's future appointments with subspecialty services (and what problem will be evaluated by each subspecialty) 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). (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. 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 [8]. 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 [9]. 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 [10,11]. 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'.)
Immunization — Preterm infants are at increased risk for vaccine-preventable infections. Immunization in the preterm infant results in a protective antibody response [12-20]. As a result, the American Academy of Pediatrics (AAP) generally recommends that medically stable preterm infants should receive full immunization based upon their chronological age consistent with the schedule and dose recommended for normal full-term infants (figure 1) [21]. (See "Standard immunizations for children and adolescents: Overview", section on 'Other special circumstances' and "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 primary care clinician should obtain complete detailed records of any immunizations given in the NICU.
There are specific issues with some immunizations in the preterm infant that are highlighted below.
●Hepatitis B (HBV) – The AAP and Advisory Committee on Immunization Practices (ACIP) recommend that HBV immunization be administered to preterm infants according to the HBsAg status of the mother and the birth weight (BW) of the infant.
•For infants who weigh <2 kg (4.4 pounds) at birth and are born to women who are hepatitis B surface antigen (HBsAg) negative, the first dose of hepatitis B vaccine is postponed until hospital discharge or 30 days of age, whichever is earlier (table 1). For infants of mothers with positive or unknown HBsAg status, the first vaccine dose is given in the NICU but is not counted as part of the vaccine series.
•For all other infants cared for in the NICU including preterm infants whose BW ≥2 kg, the immunization schedule is the same as recommended for healthy full-term infants and should be begun during the birth hospitalization and completed after discharge (table 2). (See "Hepatitis B virus immunization in infants, children, and adolescents", section on 'Routine infant immunization'.)
●Influenza – Preterm infants are at high risk for complications from seasonal influenza virus infection and should receive influenza vaccine after six months of age [21]. For all infants, whether they are preterm or term infants, two intramuscular doses of the inactivated influenza vaccine are given one month apart from each other starting at a chronological age of six months [21]. Family members and household contacts of infants younger than six months of age or any age with bronchopulmonary dysplasia, especially those at risk for respiratory illness, should be immunized with the influenza vaccine. (See "Seasonal influenza in children: Prevention with vaccines", section on 'Target groups'.)
●Respiratory syncytial virus (RSV) – Preterm infants, especially those with bronchopulmonary dysplasia (BPD), are at increased risk for significant morbidity and mortality from RSV infection. The prophylactic administration of palivizumab, a humanized monoclonal antibody against RSV, has been shown to prevent severe RSV in high-risk infants. This includes all EPT infants born and more mature infants (GA >28 weeks) with BPD, congenital heart disease with cardiovascular compromise (table 3), and significant airway abnormalities or neuromuscular disease. (See "Respiratory syncytial virus infection: Prevention in infants and children", section on 'Indications for palivizumab'.)
●Pertussis – All adults older than 19 years of age should receive a single dose of the combination tetanus toxoid, reduced, diphtheria toxoid and acellular pertussis (Tdap) vaccine if they have not already received it, especially if they are in close contact with an infant. All parents and other care providers of NICU graduates should check with their primary care provider to see if they have received Tdap. (See "Tetanus-diphtheria toxoid vaccination in adults", section on 'Indications for Td or Tdap vaccination in adults'.)
●Rotavirus – The AAP recommends initial vaccination of preterm infants at or following discharge from the hospital if they are clinically stable and at least 6 weeks, but fewer than 15 weeks, of age. (See "Rotavirus vaccines for infants", section on 'Schedule'.)
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 [21].
Screening — NICU graduates are at increased risk for hearing, vision, and neurodevelopmental problems. These conditions often are identified in the NICU or in some cases 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. If not stated in the discharge summary, the primary care clinician should determine when the next evaluation is needed.
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: Surveillance and screening in primary care", section on 'Approach to ASD surveillance and screening'.)
Hearing — Although the estimated rate of being deaf or hard of hearing is 1 to 2 per 1000 newborns in the United States, the risk is 7 times higher among infants admitted to the NICU compared with healthy term neonates [22]. Because of the increased risk for sensorineural hearing loss, including auditory neuropathy/dyssynchrony (AN/AD), in NICU patients, the Joint Committee on Infant Hearing (JCIH) which encompasses multiple national organizations in the United States, recommends automated auditory brainstem response as the initial screening test for hearing for infants during birth hospitalization. Regardless of previous hearing-screening outcomes, all infants with or without risk factors 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. Follow-up audiologic evaluation during the period from hospital discharge to nine months of age for infants identified to have perinatal or postnatal risk factors should be performed to ensure the timely diagnosis of hearing loss (table 4). (See "Screening the newborn for hearing loss", section on 'Neonatal intensive care unit' and "Screening the newborn for hearing loss", section on 'Infants with risk factors for hearing loss'.)
Vision — NICU graduates, especially very low birth weight (VLBW) infants (BW <1500 g), are at increased risk for ophthalmologic abnormalities including retinopathy of prematurity (ROP) and vision problems. For all VLBW survivors, examination by an ophthalmologist experienced in the evaluation of infants and children at 9 to 12 months and at two to three years of age is suggested, as they are at increased risk for later development of ophthalmologic disorders such as strabismus, myopia, anisometropia, amblyopia, cerebral vision impairment, cataracts, color vision deficits, constricted visual fields, nystagmus, and late retinal detachment [23,24] (See 'Ophthalmologic conditions' below.)
Neurodevelopment — NICU graduates are at increased risk for developmental delays and disabilities compared with healthy term infants. The risk is increased 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 [6,7]. The primary care provider also plays a crucial role in identifying and referring at-risk infants for further evaluation and early intervention services [25,26].
In the United States, individual states vary in their eligibility criteria for services provided by early intervention programs. In many states, infants are referred to early intervention programs directly from the NICU. Primary care clinicians should be familiar with their state's requirements and ensure eligible patients have been referred or initiate a new referral as soon as possible after discharge home. Following referral, primary care clinicians should follow up with the family to ensure that the infant is receiving appropriate services specific to the infant's developmental needs. The long-term neurodevelopment outcome of preterm infants and their follow-up care are discussed 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 very challenging to parents because of social, financial, and psychological stresses [27]. There is also evidence that racial and ethnic disparities occur in referral and participation in support services [28], such as early intervention, that the primary care provider should consider. The incidence of parental depression and anxiety is high both during their infant's NICU stay and especially in the months after discharge to home. The AAP recommends integrating postpartum depression surveillance and screening at the one-, two-, four-, and six-month visits. The clinician 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. (See "Postpartum unipolar major depression: Epidemiology, clinical features, assessment, and diagnosis".)
NICU graduates are at-risk for the vulnerable child syndrome that 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) [29]. 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 patient 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 [30]. (See "Complications and long-term pulmonary outcomes of bronchopulmonary dysplasia", section on 'Respiratory disorders associated with bronchopulmonary dysplasia'.)
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 impairment. A summary of these disorders are presented here with more detailed discussions presented in separate topics.
Respiratory — NICU graduates often have long-term respiratory difficulties even after hospital discharge. The most common respiratory problem in preterm infants is bronchopulmonary dysplasia (BPD), also referred to as chronic lung disease of prematurity. In addition, NICU graduates are at risk for reactive airway disease and respiratory infections especially respiratory syncytial virus [31,32]. (See "Bronchiolitis in infants and children: Clinical features and diagnosis" and "Risk factors for asthma", section on 'Prematurity'.)
Bronchopulmonary dysplasia (BPD) — BPD is a neonatal chronic lung disease (table 5) (see "Bronchopulmonary dysplasia: Definition, pathogenesis, and clinical features", section on 'Definitions'). Infants with BPD require supplemental oxygen past 36 weeks adjusted age and sometimes are discharged home on supplemental oxygen. They typically have abnormal lung function during the first year of life and require monitoring and supportive care. At discharge, cardiorespiratory parameters (respiratory and heart rate, blood pressure, oxygen requirement, chest radiograph, and most recent echocardiogram to assess for pulmonary hypertension) should be known as the baseline status of the infant. At home, these infants may continue to require supplemental oxygen, medications (eg, diuretics and bronchodilators), and increased caloric needs. Clinical management (in collaboration with subspecialists) is focused on monitoring the cardiorespiratory status and risk for pulmonary hypertension of the patient, ensuring optimal growth, and minimizing respiratory exacerbations due to infection and environmental irritants such as secondhand smoke. Pulmonary improvement is based upon the formation of new alveoli that occurs with adequate growth, making optimization of nutritional support essential. Follow-up imaging may include renal ultrasounds for infants who have received long-term diuretics and echocardiograms for those with severe BPD to assess for possible pulmonary hypertension. An altitude study is recommended if air travel is planned to determine whether supplemental oxygen should be provided for the flight [33].
The complications and management of BPD after NICU discharge are discussed separately. (See "Complications and long-term pulmonary outcomes of bronchopulmonary dysplasia".)
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".)
Sudden infant death syndrome (SIDS) — SIDS is the death of an infant less than one year of age that remains unexplained despite a thorough investigation. Preterm compared with term infants are at a greater risk for SIDS. Repeated education of parents about the importance of safe sleep practices, including infant sleeping in the supine position, is essential in helping to prevent SIDS. Likewise, risks associated with non-approved sleeping devices, such as swings, should be reviewed. Strategies to reduce the risk of SIDS are discussed separately. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Prevention'.)
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)".)
Ophthalmologic conditions — Preterm infants are at risk for ophthalmologic conditions, including retinopathy of prematurity (ROP), amblyopia, strabismus, significant myopia, and anisometropia [34]. Periodic ophthalmologic evaluations are required in the first three years.
●Retinopathy of prematurity (ROP) — ROP (a developmental vascular proliferative retinal disorder) is common in preterm infants, especially in very low birth weight (VLBW) infants (BW <1500 g), and is the second most common cause of blindness in childhood. It presents at approximately 32 weeks corrected gestation, peaks at 38 to 42 weeks, and begins to regress by 46 weeks. Initial retinal screening by an ophthalmologist should be performed four to six weeks after birth (which typically occurs in the NICU) with additional examinations at intervals of one to three weeks until the retinal vessels have fully matured. In addition, follow-up examinations are required for infants who have been treated for ROP and are at risk for recurrence after treatment. Infants with ROP are also at risk for myopia, astigmatism, anisometropia, and strabismus. Compliance with screening is imperative as treatment can reduce the morbidity of this condition. (See "Retinopathy of prematurity: Pathogenesis, epidemiology, classification, and screening", section on 'Screening' and "Retinopathy of prematurity: Treatment and prognosis", section on 'Follow-up'.)
●Other long-term ophthalmologic conditions — In preterm infants, especially those who have had ROP, there is a high prevalence of other ophthalmologic disorders [35]. Thus, we recommend that all preterm infants undergo examination by an ophthalmologist at 9 to 12 months of age and at two to three years of age. (See "Vision screening and assessment in infants and children".)
Other ophthalmologic conditions seen in NICU graduates include:
•Refractive errors are 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".)
-Anisometropia defined as a substantial difference in refractive error between the two eyes, occurs more often in preterm than term infants [36]. Because the eyes cannot accommodate (focus) separately, the eye with the higher refractive error can develop amblyopia. Treatment for anisometropia is vision correction with glasses or contact lenses. (See "Refractive errors in children", section on 'Anisometropia'.)
•Amblyopia is reduced vision caused by lack of use of one eye during the critical age for visual development (before seven years old). In preterm infants, amblyopia typically results from strabismus, anisometropia, and bilateral high refractive error (bilateral ametropia) [34,35]. Amblyopia can become permanent if it is not treated before 6 to 10 years of age. (See "Amblyopia in children: Classification, screening, and evaluation".)
•Strabismus defined as misalignment of the eyes, occurs in approximately 13 to 25 percent of preterm infants compared with 2 to 5 percent of term infants [38]. The most common form is esotropia (crossed eyes), although exotropia (also known as wall-eye) and hypertropia (vertical misalignment of the eyes so that one eye is higher than the other) also occur. Strabismus that does not correct with patching, atropine treatment, or glasses typically requires surgical correction. (See "Evaluation and management of strabismus in children", section on 'Evaluation'.)
•Cataracts, visual field constriction, and color vision deficits are more common in infants who have had severe ROP and who have been treated with laser therapy [24,39].
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 steroids for chronic lung disease of prematurity are at even greater risk. After discharge, bone health is monitored by serum alkaline phosphatase levels for breastfed infants. These infants require vitamin D supplementation; and/or supplemental calcium, and/or phosphorus based on alkaline phosphates levels. In general, infants who are formula-fed do not require monitoring for bone health as nutrients are provided in the formula. (See "Management of bone health in preterm infants", section on 'Subsequent management'.)
Neurodevelopment — NICU graduates are at increased risk for neurodevelopmental problems and disabilities compared with healthy term infants. As discussed previously, screening is necessary to identify infants who will benefit from early interventional services. There are several developmental and behavioral screening tools available to the primary care provider. These tests can be broad-band tools designed to screen for general developmental delay or narrowly focused for a specific disorder (eg, autism spectrum disorder [ASD] or attention deficit hyperactivity disorder [ADHD]). Developmental evaluations should be based on a patient's postmenstrual age and not chronological age until at least 24 months of age. Results from these screening tools are used to determine whether further evaluation and/or intervention is required. However, referrals to high-risk infant development follow-up clinics and Early Child Intervention Programs should be made for all preterm infants. (See "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Identifying at-risk infants' and "Long-term neurodevelopmental impairment in infants born preterm: Risk assessment, follow-up care, and early intervention", section on 'Early intervention programs' and "Developmental-behavioral surveillance and screening in primary care", section on 'Follow-up'.)
Neurodevelopment disorders, other than sensory impairment (ie, hearing and vision loss), that occur frequently in NICU graduates are listed here and are reviewed in greater detail separately.
●Motor impairment and cerebral palsy – It is important to monitor the muscle tone and motor function of NICU graduates during office visits to detect those with significant abnormalities of muscle tone (increased or decreased), persistence of primitive reflexes, or delayed motor skills [40]. If detected, an infant should be referred for further evaluation in a NICU follow-up clinic or by a pediatric neurologist, and physical therapy should be recommended.
Cerebral palsy, permanent impairment of muscle tone and reflexes with resultant functional limitation, results from non-progressive injury to the motor areas of the brain. If brain injury was detected in the NICU (severe intraventricular hemorrhage [IVH] [grade 3 or periventricular hemorrhagic infarction], periventricular leukomalacia, cerebellar injury, neonatal stroke, or other ischemic injury), the infant is at increased risk of cerebral palsy. (See "Cerebral palsy: Classification and clinical features" and "Cerebral palsy: Epidemiology, etiology, and prevention" and "Cerebral palsy: Overview of management and prognosis".)
●Cognitive impairment, speech delay, and learning disabilities – Preterm infants are at risk for cognitive impairment even if no brain injury was detected in the newborn period. It is recommended that preterm infants have periodic formal developmental assessment for early cognitive or speech delay so that intervention services can be tailored to the individual child [41].
Language and communication delays are common developmental problems of preterm infants. Hearing loss (conductive or sensorineural) may contribute to these delays; therefore, periodic hearing evaluations using auditory brainstem response testing are recommended for infants during their NICU course, and then an assessment with behavioral hearing evaluation and tympanometry after discharge (algorithm 1). (See "Screening the newborn for hearing loss", section on 'Infants with risk factors for hearing loss' and "Screening the newborn for hearing loss", section on 'Neonatal intensive care unit'.)
Parents should be made aware that preterm infants are at increased risk for learning differences at school age. Early detection with appropriate educational intervention can lead to increased school performance [26]. (See "Long-term neurodevelopmental impairment in infants born preterm: Epidemiology and risk factors" and "Evaluation and treatment of speech and language disorders in children" and "Specific learning disabilities in children: Clinical features", section on 'Risk factors'.)
●Behavioral and psychosocial difficulties – Children who were born preterm are more likely than children born full term to have specific behavioral and psychological problems. These include ADHD, general anxiety, depression, poor social interaction, and ASD. There are narrow-band screening tools directed towards ADHD (Conners 3rd edition ADHD Index) and ASD (Modified Checklist for Autism in Toddlers, Revised with follow-up). (See "Long-term neurodevelopmental impairment in infants born preterm: Epidemiology and risk factors", section on 'Behavioral and mental health problems' and "Attention deficit hyperactivity disorder in adults: Epidemiology, pathogenesis, clinical features, course, assessment, and diagnosis" and "Autism spectrum disorder: Evaluation and diagnosis" and "Developmental-behavioral surveillance and screening in primary care", section on 'Follow-up' and "Autism spectrum disorder: Screening tools", section on 'Tools for children <3 years'.)
●Postnatal epilepsy – NICU graduates are at increased risk of postnatal seizure disorders, particularly if they had neonatal seizures or brain injury and/or structural brain abnormality detected in the newborn period. (See "Etiology and prognosis of neonatal seizures", section on 'Postneonatal epilepsy'.)
●Severe IVH and post-hemorrhagic ventricular dilation (PHVD) – Infants with severe IVH (grade 3 or 4 [periventricular hemorrhagic infarction]) are at-risk for PHVD. Most patients with PHVD are identified during the NICU course, however, rarely there is late progression after discharge. As a result, for patients who had severe IVH, head circumference should be checked frequently over the first few months after discharge. If excessive head growth is detected, referral to a pediatric neurologist or neurosurgeon is indicated for further evaluation. (See "Germinal matrix hemorrhage and intraventricular hemorrhage (GMH-IVH) in the newborn: Prevention, management, and complications", section on 'Posthemorrhagic ventricular dilatation (PHVD)'.)
Likewise, poor head growth may be a sign of periventricular white matter injury or cortical atrophy resulting in decreased total brain volume and ventriculomegaly ex vacuo. These infants are at increased risk for cerebral palsy and developmental delay.
Orthopedic disorders — Torticollis and 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. If plagiocephaly develops, further intervention may be necessary. (See "Congenital muscular torticollis: Management and prognosis" and "Overview of craniosynostosis", section on 'Plagiocephaly'.)
Surgical
Post-discharge care — Some NICU graduates will have had surgeries prior to being discharged from the NICU. These include surgical bowel resection secondary to necrotizing enterocolitis (NEC) and/or intestinal perforation, gastrostomy tube placement, Nissen fundoplication, ventriculoperitoneal shunts, tracheotomy, laryngeal reconstruction, and cardiac surgeries. Parents should be instructed on post-operative care when the infant is discharged to home. Coordination with surgical services and post-discharge follow-up should be arranged.
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 [42]. 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 [43,44]. Other risk factors include male sex and prolonged mechanical ventilation [45]. The rate of incarcerated hernia is greater in preterm compared with term infants [46]. Hernias are often detected in the NICU but can occur after discharge. If detected in the NICU, repair may be delayed until the infant is medically stable after discharge. If not repaired, surgical follow-up should have been scheduled. 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 [47]. (See "Inguinal hernia in children".)
Dental — 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 [48,49]. Infants with a history of prolonged intubation can have v-shaped palates, posterior cross bites, deformed incisal edges, and missing teeth [44]. The American Academy of Pediatric Dentistry Guideline on Infant Oral Health Care recommends a first visit to the dentist by 12 months of age. (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, there is an increased risk of preterm birth in 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 10 to 20 percent [4,50-52]. Preterm infants are twice as likely to be readmitted then term infants during the first year of life [53]. Population-based studies have shown that the risk of readmission increases with decreasing gestational age (GA) and NICU graduates born extremely preterm (GA <28 weeks) have the highest rates of hospitalization [54,55].
Most common causes for rehospitalization include infections (especially respiratory syncytial virus and other respiratory viral infections), respiratory problems (wheezing), feeding difficulties with inadequate growth (failure to thrive), and surgical issues [4,52,56,57]. Parents should be made aware of the increased potential of readmissions for their preterm infant.
Other risk factors — In addition to prematurity, risk factors for rehospitalization includes neurologic impairment (seizure disorder and cerebral palsy), airway obstruction, bronchopulmonary dysplasia, and those who required mechanical ventilation at birth [58,59]. The risk of rehospitalization increases with decreasing GA, and rehospitalization rates for preterm infants compared with term infants remain higher during the first six years of life [60].
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 5th to 6th 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 10th to 12th 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)")
SUMMARY AND RECOMMENDATIONS — Advances in intensive care have improved the survival of high-risk preterm and critically ill term infants who continue to need comprehensive clinical care after discharge from the neonatal intensive care unit (NICU). 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.)
●The initial primary care outpatient visit is scheduled within 48 to 72 hours after hospital discharge. It includes a review of the infant's NICU course, current medications, and medical equipment, assessment of the infant's progress (eg, growth) and the family's handling of the responsibility and stress of caring for the infant following discharge, and confirmation of future appointments. (See 'Initial visit' above.)
●Subsequent visits focus on routine primary care (eg, growth, nutrition, and immunization), 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. (See 'Subsequent visits' above.)
●Follow-up visits closely monitor the patient's growth. 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. In addition, evaluation for contributing conditions (eg, gastroesophageal reflux or feeding difficulties) is performed. (See 'Growth and nutrition' above and "Growth management in preterm infants" and "Neonatal oral feeding difficulties due to sucking and swallowing disorders".)
●For all infants regardless of gestational age (GA), we recommend administration of childhood vaccines based upon his/her chronological age (figure 1) (Grade 1B). Specific issues regarding immunization for the NICU graduate include vaccination for Hepatitis B, respiratory syncytial virus, rotavirus and influenza. In addition, adults who will be in close contact with the infants should receive a pertussis booster. (See 'Immunization' above.)
●Screening for hearing, vision, and neurodevelopmental problems 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.)
●The clinician should be familiar with the more common medical problems that may present 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), gastroesophageal reflux (GER), and anemia of prematurity. (See 'Medical care of specific conditions' above.)
●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, neurologic impairment, bronchopulmonary dysplasia, mechanical ventilation at birth). (See 'Hospital readmissions' above.)
