Care of the neonatal intensive care unit graduate

All topics are updated as new evidence becomes available and our peer review process is complete.

Literature review current through: Sep 2016. | This topic last updated: Aug 27, 2015.

INTRODUCTION — Advances in neonatal intensive care have improved the survival of high-risk preterm and critically ill term infants (see "Incidence and mortality of the preterm infant", section on 'Trends over time'). Infants who are discharged from the neonatal intensive care unit (NICU) require continued comprehensive clinical care. Thus, the primary care provider needs to identify, understand, and manage their ongoing medical needs [1,2]. The primary care clinician plays a key role in providing optimal continuity of treatment by coordinating transition of care from the neonatologist, providing direct medical care, and facilitating ongoing care of the infant by subspecialists and other health professionals.

This topic will review the care of the infant who is discharged from the NICU. The discussion primarily focuses on preterm infants who represent the majority of NICU graduates, especially the issues in the care of the very low birth weight (VLBW) infant (birth weight ≤1500 g). Criteria for discharge and planning for discharge are discussed separately. (See "Discharge planning for high-risk newborns".)

OVERVIEW — With the advances in neonatal care, the number of preterm infants and critically ill term infants who survive and are discharged from the neonatal intensive care unit (NICU) continues to increase. Although most NICU graduates are discharged from the NICU when their adjusted gestational age is near or at term, they differ greatly in their medical needs compared with healthy term infants.

Because of the need to provide optimal care to the NICU graduates and address their specific medical issues, the American Academy of Pediatrics (AAP) has developed guidelines for the primary care provider in the management of the high-risk infant [3]. These guidelines 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 provider to identify and care for the problems associated with these infants. Specific quality-of-care indicators for the neurodevelopmental follow-up care of very low birth weight children have also been developed by an AAP expert panel and serve as a useful guide for primary care providers [4].

Based on the AAP guidelines, the role of the primary care clinician in the care of the NICU graduate includes [3]:

●Communication with the neonatologist and family (if possible) during the NICU course of the infant. 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. For the family, contact with both the neonatologist and primary care provider decreases confusion and uncertainty regarding transfer of care. (See "Discharge planning for high-risk newborns".)

 

●Primary medical care responsibility when the infant no longer requires intensive care treatment. The primary care clinician provides care to the infant either as an outpatient upon discharge home or as an inpatient upon transfer back to the referring hospital.

 

●Knowledge of existing medical problems and 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, retinopathy of prematurity, and developmental delay, and they require hearing screening, retinal examination, and neurodevelopmental evaluation.

 

●Ongoing coordination of 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.

 

●Consistent care that provides continuity of information and psychosocial support to the family [5].

 

OUTPATIENT MANAGEMENT — Ambulatory management of neonatal intensive care unit (NICU) graduates includes evaluation of growth, vision, hearing, and development, and immunization. In addition, many infants will also have multiple ongoing medical problems for which the primary care provider can either assume primary responsibility or share responsibility with specialists and other medical professionals for their management. (See 'Common medical problems' below.)

Initial visit — The initial visit is scheduled within a few days to a week after discharge from the hospital depending on the patient's gestational age, weight, and medical problems [6]. The visit includes:

●Review of the infant's NICU course, current medications, and medical equipment. This should include information on growth parameters (head circumference, length, and weight, and the growth curve during the birth hospitalization), vital signs (respiratory and heart rate, percent oxygen saturation on room air, and blood pressure), nutrition (type of feeding, and volume and frequency of feeds, most recent nutrition-related lab studies (hematocrit, reticulocyte count, and serum levels of calcium, phosphate, and alkaline phosphatase), immunization record, neonatal screening (metabolic, cranial imaging, hearing, ophthalmologic), and other specific problems related to individual patients.

 

●Evaluation of the infant's progress since discharge, including growth and assessment of the patient's specific medical problems.

 

●Time to listen and address the family's concerns [3]. The primary care provider should ensure that the family understands the infant's medical diagnoses, and any medications (including administration and schedule) and equipment required in his/her care. During this visit, the clinician should also check on how the family is coping with the stress of bringing an infant home from the NICU.

 

●Review the patient's future appointments with subspecialty services and the schedule of subsequent primary care visits and hearing and vision screening. (See 'Screening'below.)

 

Subsequent visits — The schedule for subsequent visits will depend on the patient's medical condition. In general, primary care visits will be more frequent in the beginning (eg, every one to two weeks) to monitor and establish adequate growth. Visits will focus on routine primary care (eg, immunization), general care directed towards the NICU graduate (ie, hearing, vision and development screening), and specific medical problems of the individual patient.

Growth — NICU graduates are at risk for inadequate growth due to their increased caloric and nutrient requirements and poor feeding. After discharge from the hospital, these patients require frequent monitoring of their growth and overall nutrition. Optimal growth is still not clearly defined [7]. Eating problems are more common among children who were extremely preterm, and include swallowing problems, oral motor dysfunction, hypersensitivity, delayed feeding skill development, and behavioral problems (oral aversion) (see "Sucking and swallowing disorders in the newborn"). A study that followed children into school age found that eating problems continued to be present at six years of age [8]. When problems are noted, prompt referral to a feeding specialist can avoid growth failure and pathologic feeding practices.

Monitoring the growth and nutritional management of the preterm NICU graduate is discussed in greater detail separately. (See "Growth management in preterm infants".)

Immunization — Preterm infants are at increased risk for vaccine-preventable infections. Immunization in the preterm infant results in a protective antibody response [9-15]. As a result, the American Academy of Pediatrics (AAP) 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) [16]. (See "Standard immunizations for children and adolescents", section on 'Overview'.)

Immunizations may have been started in the NICU. However, delays in immunization are common, especially in unstable infants. Thus, the 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 of the infant prior to discharge. (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 [16]. Influenza vaccination is recommended for all children older than six months. In infants, whether they are preterm or term infants, two intramuscular doses of the inactivated influenza vaccine should be given one month apart from each other starting at a chronological age of six months [16]. Family members and household contacts of infants younger than six months of age, 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 chronic lung disease, 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 who are preterm, or have bronchopulmonary dysplasia, congenital heart disease, airway abnormalities, or neuromuscular disease. Indications for Palivizumab for preterm survivors including those with BPD are discussed separately. (See "Respiratory syncytial virus infection: Prevention", section on 'Immunoprophylaxis'.)

 

●Pertussis – All adults older than 19 years of age should receive a single pertussis booster, 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 are due for a booster vaccine. The pertussis booster vaccine is given in combination with vaccines for diphtheria and tetanus (ie, Tdap). (See "Tetanus-diphtheria toxoid vaccination in adults", section on 'Indications for Td or Tdap vaccination'.)

 

●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 [16].

Screening — NICU graduates are at increased risk for hearing, vision, and neurodevelopmental problems. These conditions may have been identified in the NICU or may only be recognized after discharge. As a result, these infants require screening for these potential problems.

Hearing — The estimated prevalence of bilateral sensorineural hearing loss (SNHL) is one to two per 1000 newborns in the United States, but is 10 to 20 times higher among infants admitted to the NICU than in healthy term neonates. Because of the increased risk for SNHL in patients admitted to the NICU, the Joint Committee on Infant Hearing, which encompasses seven national organizations, recommends automated auditory brainstem response as the screening test for hearing. Follow-up audiological evaluation during the first year of life is also critical to ensure the timely diagnosis of late-onset hearing loss. Infants with other risk factors such as meningitis or cytomegalovirus should have follow-up testing performed soon after discharge. Screening the newborn for hearing loss, including infants admitted to the NICU and their follow-up after discharge, is discussed in greater detail separately. (See "Screening the newborn for hearing loss", section on 'NICU admissions' and "Screening the newborn for hearing loss", section on 'NICU'.)

Vision — NICU graduates, especially very low birth weight (VLBW) and extremely low birth weight (ELBW) infants (birth weight <1500 g and <1000 g, respectively), are at increased risk for ophthalmologic abnormalities, including retinopathy of prematurity (ROP). ROP, a developmental vascular proliferative retinal disorder, is seen in VLBW and ELBW infants. ROP typically presents at approximately 32 weeks gestation, peaks at 38 to 40 weeks, and begins to regress by 46 weeks.

Initial retinal screening by an ophthalmologist should be performed four to six weeks after birth with additional examinations at intervals of one to three weeks until the retinal vessels have fully matured.

Screening is indicated for patients that are at increased risk for ROP:

●All infants with birth weights ≤1500 g or a gestational age (GA) of less than 31 weeks

●Infants with birth weights between 1500 g and 2000 g or a GA >31 weeks whose clinical course places them at increased risk

 

Compliance with screening is imperative, as ROP is the second most common cause of childhood blindness, and treatment can reduce the morbidity of this condition. (See "Retinopathy of prematurity".)

VLBW survivors are also at increased risk for other ophthalmologic disorders, such as strabismus, myopia, anisometropia, amblyopia, cataracts, nystagmus, and late retinal detachment. They should undergo examination by an ophthalmologist at 9 to 12 months of age. (See 'Ophthalmologic conditions' below.)

Neurodevelopment — NICU graduates are at increased risk for developmental delays and disabilities compared with term infants. The risk is increased with decreasing gestational age. The primary care provider plays a crucial role in identifying and referring at-risk infants for further evaluation and early intervention services. States vary in their eligibility criteria for services. 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 outcome of preterm infants: Epidemiology and risk factors".)

Psychosocial issues — Bringing home a NICU graduate can be very challenging to parents because of social, financial, and psychological stresses [17,18]. The incidence of maternal depression is high both during their infant's NICU stay and especially in the months after discharge to home. The clinician should be attentive to these stresses and provide care and assistance to these parents. Support services, such as home health nursing visits, early child interventions services, and support groups, should be offered to parents of the NICU graduate. (See "Postpartum blues and unipolar depression: Epidemiology, clinical features, assessment, and diagnosis".)

Vulnerable child syndrome — Features of this syndrome include parents being overprotective of the NICU graduate, abnormal separation difficulties, overindulgence, sleep problems, and long-term problems (eg, behavioral issues, poor peer relationships, and poorer developmental outcome) [19]. 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 monitoring of the infant in question.

Daycare — Some NICU graduates may be too unstable initially to be placed in formal daycare. When choosing a 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 bronchopulmonary dysplasia (BPD) are at increased risk for respiratory morbidities with an increased risk of emergency room visits and use of systemic corticosteroids and antibiotics, and experience more days with trouble breathing [20].

Car seats — All fifty states in the United States require the use of car safety seats for infants to prevent morbidity and mortality caused by motor vehicle accidents. However, preterm infants are at increased risk for cardiopulmonary compromise while in car seats. Compared with term infants, preterm infants have greater decreases in oxygen saturation and more frequent episodes of desaturation, bradycardia, and apnea while restrained in car seats or beds [21-23], with the risk being greatest with infants with predischarge weights ≤2000 g [24]. In addition, low birth weight full-term infants, especially those with maternal opioid exposure, appear to have a similar risk for cardiopulmonary compromise while in car seats [25].

AAP guidelines — Because of these observations, guidelines were developed by the American Academy of Pediatrics (AAP) in 1996 to minimize the risk of cardiopulmonary compromise [26], and they were revised in 2009 [27].

They include:

●Observation of all infants <37 weeks gestation in their car seats before discharge to evaluate for possible apnea, bradycardia, or oxygen desaturation. In addition, infants greater than 37 weeks who are at risk for obstructive apnea, bradycardia, or oxygen desaturation should also be evaluated. These include infants with hypotonia (eg, Down syndrome), those who have undergone cardiac surgery, or those who have micrognathia (eg, Pierre Robin sequence).

 

The duration of observation varies among institutions, but a period of 90 to 120 minutes or the duration of travel, whichever is longer, is suggested. During this trial, the infant's heart and respiratory rate, and oxygen saturation should be monitored. Infants "fail" the screen if they have: oxygen desaturation below 90 or 93 percent for more than 10 seconds, apnea greater than or equal to 20 seconds, or bradycardia less than or equal to 80 beats per minute [28]. In one retrospective review of 1173 preterm infants, about 4 percent of patients failed the car seat trial [29]. However, the validity of the infant car seat test as an accurate predictor of clinically adverse events has been challenged. For example, in one study of 313 infants, 90 percent of the 178 patients who had an abnormal polysomnogram passed their infant car seat challenge [30]. Nevertheless, until a test with a better predictive value, we continue to observe patients in car seats for evidence of cardiorespiratory instability prior to discharge.

 

If the infant fails the car seat test, 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. 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. (See 'Car beds' below.)

 

●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.

 

●Families should be instructed by trained hospital staff on how to position their infant properly in the car seat. 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.

 

●The infant is placed in the rear seat in a rear-facing car safety seat, which is the safest position. The car safety seat should never be placed in the front passenger seat with a passenger-side front 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.

 

●Infants with documented cardiopulmonary compromise should travel in a supine or prone position in an alternative safety device, such as a car bed.

 

●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.

 

●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.

 

Car beds — As noted above, the use of car beds has been suggested by the AAP for infants with documented cardiopulmonary compromise in car seats [27]. However, it is unclear whether car beds provide a safer mode of transportation than car seats.

●One crossover study of 151 very low birth weight infants reported no differences between the use of car beds versus car seats in the frequency of cardiopulmonary events [23]. Cardiopulmonary events occurred in 15 percent of infants while in the car seat and 19 percent while in the car bed. These results suggest that cardiopulmonary events are common regardless of whether a car bed or car seat is used.

 

●A second crossover study of 200 term newborns (gestational age 38 to 40 weeks) reported significant oxygenation desaturations when infants were observed in both car beds and car seats as compared with hospital cribs [31]. The mean oxygen saturations were 97.9, 96.3, and 95.7 percent when infants were positioned in the hospital crib, car bed, and car seat, respectively. The mean minimal oxygen saturations were lower in both car bed and seat (83.7 and 83.6 percent) compared with the crib (87.4 percent). The mean time of oxygen saturation below 95 percent was higher in both the car bed and seat (17.2 and 23.9 percent) compared with the crib (6.5 percent).

 

●In a smaller study of 20 preterm infants (median gestational age 33 weeks) evaluated by polysomnography, there was no difference in the frequency of episodes of airway obstruction [32]. There were fewer episodes of central apnea and arousal in infants when placed in car beds versus seats, but preterm infants exhibited significant respiratory instability in both settings.

 

As a result of these findings, when a car bed is being considered, we agree with the AAP guidelines that the infant should also be observed for cardiopulmonary stability for 90 to 120 minutes in a car bed. The same criteria as noted above need to be met prior to discharge and transportation of the infant in a car bed [27]. If a car bed is used initially, before transitioning to a car seat, a period of observation of the infant in his/her car seat for cardiopulmonary events should be considered [27]. (See 'AAP guidelines' above.)

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 [33-36]. Preterm infants are twice as likely to be readmitted then term infants during the first year of life [37], population-based studies have shown that the risk of readmission increases with decreasing gestational age [38,39].

Most common causes for rehospitalization include infections (especially respiratory syncytial virus infection), respiratory problems, feeding problems, and surgical issues [36,40,41]. Parents should be made aware of the increased potential of readmissions for their preterm infant.

Risk factors — Additional risk factors for hospital readmission in NICU graduates include significant neonatal morbidity (eg, mechanical ventilation) and extreme prematurity.

NICU graduates with significant neonatal morbidities are at increased risk for rehospitalization, as illustrated by a retrospective national register study of all very preterm infants (gestational age below 32 weeks) born alive in Finland between 2000 and 2003 [42]. The highest rates of rehospitalization were seen in infants with seizures and obstructive airway disease. Rehospitalization rates increased with the number of morbidities at one, two, and three years of age as follows:

●No morbidities: 40, 18, and 13 percent, respectively

●One morbidity: 65, 41, 27 percent, respectively

●Two or more morbidities: 73, 63, and 56 percent, respectively

 

A multicenter study reported that preterm infants who required mechanical ventilation at birth are also at risk for rehospitalization [43]. In this cohort of 512 patients, 58 percent required readmission, including 19 percent who were admitted to the intensive care unit. One-half of the patients had multiple admissions, with an average of 3.9 admissions per patient.

NICU graduates who were extremely preterm have the highest rates of hospital rehospitalization [36,41,44]. In a large study from the National Institute of Child Health and Human Development Neonatal Research Network of 3787 extremely preterm survivors (mean birth weight 787 g) born between 2002 and 2005, 45 percent of the cohort were rehospitalized by 18 to 22 months [41]. The reasons for rehospitalization were respiratory symptoms (45 percent), surgery (21 percent), infection (16 percent), growth and nutrition issues (5 percent), central nervous system abnormalities (4 percent), and a variety of other causes (9 percent).

COMMON MEDICAL PROBLEMS — Neonatal intensive care unit (NICU) graduates are at risk for complications in various organ systems due to their immaturity and long-term sequelae from medical problems during their NICU course. The primary care clinician should be familiar with the more common medical problems that are found in the NICU graduate and coordinate subspecialty care when needed. The most common of these problems are briefly reviewed below, and many are discussed as individual topics in greater detail elsewhere in the program.

Respiratory — NICU graduates often have long-term respiratory issues even after discharge. The most common respiratory problem in preterm infants is bronchopulmonary dysplasia (BPD), also referred to as chronic lung disease of prematurity. In addition, these infants are at risk for reactive airway disease [40] and respiratory infections [45,46].

Bronchopulmonary dysplasia (BPD) — BPD is defined as respiratory disease in infants who require supplemental oxygen at 36 weeks postmenstrual age and who have persistent abnormalities on chest radiographs [47]. Infants with BPD often have abnormal lung function during the first year of life and require monitoring and supportive care. At discharge, cardiorespiratory parameters (including respiratory and heart rate, blood pressure, oxygen requirement, chest radiograph, and echocardiogram to assess for the presence of pulmonary hypertension) should be obtained as a baseline status of the patient. 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 of the patient, ensuring optimal growth, and minimizing respiratory exacerbations. Pulmonary improvement is based upon the formation of new alveoli that occurs with adequate growth. For patients on diuretic therapy, electrolytes should be monitored on a regular basis.

In patients who require supplemental oxygen and medications, and exhibit improved pulmonary function, oxygen and medications are weaned slowly, ensuring that the patient maintains adequate growth. Often, the patient is generally allowed to outgrow the diuretic dose, which is discontinued when it reaches a subtherapeutic dose.

Patients should be monitored for morbidities related to BPD, including acute respiratory exacerbations, upper and lower respiratory infections, cardiac problems (eg, cor pulmonale and pulmonary hypertension), and growth failure [6]. Any respiratory problems should be treated aggressively with oxygen, diuretics, bronchodilators, and/or steroids [1]. These patients often have a high readmission rate to the hospital during the first two years of life [48,49]. After two years of age, most respiratory and nutritional problems begin to improve [50]. (See "Outcome of infants with bronchopulmonary dysplasia" and "Complications and long-term pulmonary outcomes of bronchopulmonary dysplasia".)

Apnea of prematurity — Approximately 25 percent of preterm infants develop apnea of prematurity. Most will outgrow this by the time they reach maturity at a postmenstrual age of 40 weeks, often prior to discharge from the NICU. However, some will continue to have apnea and may be discharged home on methylxanthine therapy, such as caffeine. Patients may also be discharged home on apnea monitors. 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 with a peak risk at 50 to 52 weeks postmenstrual age [1]. Infants may have home apnea monitors, but there is no evidence that monitoring decreases the rate for SIDS.

Infants born prematurely or admitted to the NICU for other reasons should follow the American Academy recommendations of supine (back) sleeping position. (See "Sudden infant death syndrome: Risk factors and risk reduction strategies", section on 'Prematurity'.)

Gastroesophageal reflux (GER) — GER is common in preterm infants and in those with BPD, neurological impairment, or congenital defects (eg, tracheo-esophageal fistulas or diaphragmatic hernias). Complications associated with GER in the preterm infant include poor weight gain due to decreased caloric intake, apnea and bradycardia, aspiration, choking, esophagitis, laryngospasms, and discomfort.

The evaluation and management of GER in the preterm infant are discussed separately. (See "Gastroesophageal reflux in premature infants".)

Anemia of prematurity — Preterm and low birth weight infants develop anemia that occurs earlier and is more severe than the physiologic anemia seen in term infants. In preterm infants, the nadir for hemoglobin level is 7 to 10 g/dL at 4 to 8 weeks after birth compared with 11 g/dL at 8 to 12 weeks in term infants. (See "Anemia of prematurity".)

In our practice, all preterm infants (less than 37 weeks gestation) and low birth weight infants (birth weight less than 2500 g) who are breastfed receive iron supplementation of 2 to 4 mg/kg per day through 12 months of age. This approach is consistent with the recommendation from the 2010 American Academy of Pediatrics Committee on Nutrition report on the diagnosis and prevention of iron deficiency and iron deficiency anemia [51]. Clinical trials have reported that iron supplementation of 2 mg/kg per day compared to a lower dose of supplementation (1 mg/kg per day) and placebo was associated with a lower rates of iron deficiency and iron deficiency anemia in the first year of life [52,53].

Infants who receive iron-fortified formula need less additional supplementation than those who are exclusively breastfed, because for a given volume, iron-containing formula contains a higher concentration of iron than breast milk. Symptomatic infants may require red blood cell transfusion.

Ophthalmologic conditions — Preterm infants are at risk for ophthalmologic conditions, including retinopathy of prematurity (ROP), amblyopia, strabismus, significant myopia, and anisometropia [54].

As previously discussed, ROP (a developmental vascular proliferative retinal disorder) is common in preterm infants, especially in extremely low birth weight (ELBW) and very low birth weight (VLBW) infants, and is the second most common cause of blindness in childhood. Screening for ROP with retinal examination is imperative four to six weeks after birth, as treatment can reduce the morbidity of this condition. (See 'Vision' above and "Retinopathy of prematurity".)

In preterm infants, there is a high prevalence of other ophthalmologic disorders, as demonstrated in a report of ELBW infants evaluated at five years of age. Reduced visual acuity, strabismus, myopia, and astigmatism were present in 27, 14, 12, and 11 percent, respectively [55]. 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 "Visual development and vision assessment in infants and children".)

In addition to ROP, other ophthalmologic conditions seen in NICU graduates include:

●Refractive errors − Refractive errors are more frequent in preterm than term infants. Among preterm infants evaluated at 4.5 years, the proportion of eyes with myopia and high myopia (5 diopters or greater) was 15.7 and 3.9 percent, respectively [56]. Low gestational age and severe ROP increased the risk. Vision is corrected with glasses or contact lenses. (See "Refractive errors in children".)

 

●Amblyopia − 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) [54,55,57]. 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 − 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 [50]. 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 typically requires surgical correction. (See "Evaluation and management of strabismus in children", section on 'Evaluation'.)

 

●Anisometropia − Anisometropia, defined as a substantial difference in refractive error between the two eyes, occurs more often in preterm than term infants [56,58]. 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.

 

Neurodevelopmental problems — NICU graduates are at increased risk for neurodevelopmental problems and disabilities compared with term infants. As discussed previously, screening is necessary to identify infants with neurodevelopmental problems who require early interventional services, and is discussed elsewhere. (See "Long-term neurodevelopmental outcome of preterm infants: Management".)

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 − Cerebral palsy is a common sequelae seen in approximately 7 to 9 percent of very low birth weight infants (birth weight below 1500 g). It is important to monitor the motor function of NICU graduates during office visits to detect those with significant motor impairment who require referral to a pediatric neurologist for further evaluation (see "Clinical features and classification of cerebral palsy" and "Epidemiology, etiology, and prevention of cerebral palsy" and "Management and prognosis of cerebral palsy"). Visual motor and motor coordination problems are also more common in preterm infants; early identification of these issues and implementation of occupational therapy or physical therapy are indicated.

 

●Learning and language delays − Developmental screening is imperative so that early identification of problems can occur and early intervention be initiated. Developmental evaluations should be based on a patient's postmenstrual age and not chronological age until at least 24 months of age. Referrals to high-risk development clinics and Early Child Intervention Programs should be made for all preterm infants. (See "Long-term neurodevelopmental outcome of preterm infants: 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'.)

 

Primary care clinicians can identify infants who would benefit from early intervention by screening preterm survivors using a quality developmental screening instrument [59]. In one retrospective study, the use of a developmental screening tool, the Ages and Stages Questionnaire, compared with clinical impression increased the identification and referral rates for preterm infants (26 versus 10 percent) [60]. About half of the patients (56 percent) identified by the screening tool were eligible for early intervention services. Once delays or other developmental concerns are detected, primary care providers should ensure that their patients are receiving appropriate intervention services; for example, patients with significant motor delays should receive direct services from a physical or occupational therapist.

 

●Psychosocial difficulties − Psychosocial difficulties are increasingly a concern in the population of preterm infants. In particular, prematurity appears to be a risk factor for autism. Appropriate screening tools that the primary care clinician can use to identify children at risk for autism include the Infant Toddler Checklist for toddlers less than 18 months and the Modified CHAT, Revised with follow-up (M-CHAT-R/F) for children 16 to 30 months of age. (See "Long-term neurodevelopmental outcome of preterm infants: Epidemiology and risk factors", section on 'Behavioral and psychological effects' and "Autism spectrum disorder: Surveillance and screening in primary care", section on 'ASD-specific screening tests'.)

 

●Hydrocephalus − Posthemorrhagic hydrocephalus occurs in approximately 35 percent of preterm infants with intraventricular hemorrhage (IVH). The risk increases with the severity of IVH (ie, grades III and IV). It can be obstructive, communicating, or both; transient or sustained; and with slow or rapid progression. In some cases, shunt replacement is required. These patients need to be monitored for shunt malfunction or infection. (See "Management and complications of intraventricular hemorrhage in the newborn" and "Hydrocephalus".)

 

●Additional problems – Infants who have had treatment for severe ROP are at increased risk for other ophthalmologic problems including: cataracts, late retinal detachment, visual field abnormalities, and differences in the development of color vision. This population should be monitored very closely by a pediatric ophthalmologist. (See 'Ophthalmologic conditions' above.)

 

Surgical — 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 placements, fundoplications, ventriculo-peritoneal shunts, tracheotomy, and cardiac surgeries. Parents should be instructed on how to care for the surgical areas. 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 birth weight between 1000 to 1500 g [6]. The hernia is more noticeable when the infant is crying or straining (eg, bowel movement). Most will resolve spontaneously by two years of age. Surgical closure is considered if the hernia is still present after age four, is >2 cm in size, and/or is associated with abdominal pain [61]. Surgery is indicated if there are signs of incarceration.

 

●Inguinal hernia − Inguinal hernias are more common in preterm than term infants. The incidence of inguinal hernia varies as follows [60,62]:

 

•Birth weight 500 to 1000 g − 30 to 42 percent

 

•Birth weight 1000 to 1500 g − 10 percent

 

•Birth weight 1500 to 2000 g − 3 percent

 

Other risk factors include male sex and prolonged mechanical ventilation [63]. The rate of incarcerated hernia is greater in preterm compared with term infants [64]. If an inguinal hernia is detected, referral to pediatric surgery should be made. (See "Overview of inguinal hernia in children".)

Dental — In preterm infants, teeth eruption may be delayed. The American Academy of Pediatric Dentistry Guideline on Infant Oral Health Care recommends a first visit to the dentist by 12 months of age. Optimal exposure to fluoride after a postmenstrual age of six months is also recommended either via water or systemically administered drops [65].

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 [66,67]. Infants with a history of prolonged intubation have v-shaped palates, posterior cross bites, deformed incisal edges, and missing teeth [62].

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 neonatal intensive care have improved the survival of high-risk preterm and critically ill term infants who upon discharge continue to need comprehensive clinical care. The primary care clinician plays a key role in providing optimal continuity of these patients by coordinating transition of care from the neonatologist, providing direct medical care, and facilitating ongoing care of the infant with subspecialists and other health professionals.

The following are important aspects of outpatient primary care management of the neonatal intensive care (NICU) graduate:

●Review the infant's NICU course, current medications, and medical equipment. (See 'Initial visit' above.)

 

●Continue assessment of the patient's growth. If growth is inadequate, evaluation of the infant's nutrition and initiation of corrective measures (eg, changes in the composition, volume, and caloric density of the feeds, and mode of feeding), and evaluation for contributing conditions (eg, gastroesophageal reflux or feeding disorders) are required. (See 'Growth' above and "Growth management in preterm infants".)

 

●For all preterm infants, we recommend administration of childhood vaccines based upon his/her chronological age with the same schedule and dose recommended for normal term infants (figure 1) (Grade 1B). Patients should have received hepatitis B (HBV) immunization during their NICU course (table 1). (See 'Immunization' above.)

 

●For preterm infants with chronic lung disease and those with hemodynamically significant congenital heart disease, we recommend prophylactic administration of Palivizumab to prevent severe respiratory syncytial virus (RSV) infection (Grade 1B). Palivizumab should be administered to the following, based on their status at the start of RSV season (see 'Immunization' above and "Respiratory syncytial virus infection: Prevention", section on 'Palivizumab'):

 

•Infants <1 year of age who were born at ≤28 weeks of gestation.

 

•Infants <6 months of age who were born between 29 and 32 weeks of gestation.

 

•Infants <3 months who were born between 32 and 35 weeks of gestation who are younger than three months of age at the start of the RSV season or who are born during RSV season if they have at least one of the following two risk factors: attends child care OR there are children younger than five years of age who live permanently in the same household.

 

●For NICU graduates, we recommend administering influenza vaccine at the chronological age of six months (Grade 1B). During influenza season, family members and household contacts of at-risk infants younger than six months of age should be immunized with the influenza vaccine. (See 'Immunization' above and "Seasonal influenza in children: Prevention with vaccines", section on 'Target groups'.)

 

●Screening for hearing, vision, and neurodevelopmental problems is necessary because of the high prevalence rate in the NICU graduate.

 

•Hearing screening is performed at the time of discharge for all infants admitted to the NICU and a repeat screen is suggested in the first year of life, but sooner if they have risk factors such as meningitis or cytomegalovirus infection (Grade 2C). (See 'Screening' above.)

 

•For infants at risk for retinopathy of prematurity, we recommend retinal screening by an ophthalmologist (Grade 1A). Additional ophthalmologic examination at 9 to 12 months of age is also suggested, because other vision problems are common in NICU graduates. These include reduced visual acuity, strabismus, myopia, and astigmatism. (See 'Ophthalmologic conditions' above and "Retinopathy of prematurity".)

 

•Primary care clinicians need to ensure the NICU graduate is evaluated for neurodevelopmental disabilities and need to be familiar with community resources that would be beneficial to the child. (See "Long-term neurodevelopmental outcome of preterm infants: Epidemiology and risk factors".)

 

●Consistent care that provides continuity of information and psychosocial support to the family is important.

 

●Preterm infants in car safety seats are at increased risk for cardiopulmonary compromise and clinicians need to be familiar with the American Academy of Pediatrics guidelines for proper selection of car safety seats and positioning of the preterm infant to minimize their risk (figure 2). (See 'Car seats' above.)

 

●The clinician should be familiar with the more common medical problems that are found 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 disease syndrome (SIDS), gastroesophageal reflux (GER), and anemia of prematurity. (See 'Common medical problems' above.)

 

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