D i s c h a r g e Pl a n n i n g

Brian M. Barkemeyer, MD

KEYWORDS
 Neonatal intensive care unit  Discharge planning  Screening test  Circumcision
 Late preterm infant  High-risk infant

KEY POINTS
 Hospital discharge is a time of transition for infants and families that requires oversight
of common postnatal adaptations, screening tests, and establishment of necessary
follow-up care.
 Preterm infants face additional medical problems that vary in complexity by degree of pre-
maturity, with infants born at lowest gestational age (<28 weeks) at highest risk for compli-
cated neonatal course and adverse long-term outcomes.
 High-risk infants often have complex problems that require coordinated follow-up after
discharge essential for improved outcomes.

INTRODUCTION

Initial hospital discharge of the infant is a time of great excitement and anxiety for the
family. Health care provider and family anxiety may be heightened by any combination
of actual or perceived medical and/or social risks. Preparation of the infant and family
for discharge is an involved process that is best done through a consistent approach
from all members of the health care team perceptive to the needs of the infant and
family. Although most hospitals have routine patterns of newborn care, medical docu-
mentation, and discharge order sets, it is important that each relevant aspect of care is
applied appropriately to each child at discharge. The optimal time for discharge of the
apparently healthy newborn depends on several factors including the infant’s condi-
tion, risk for evolving problems (eg, infection, poor feeding, jaundice, and drug with-
drawal), the ability of the family to provide appropriate care for the infant, and the
timely availability of appropriate follow-up.
Nursing, medical, and support staff should be attuned to the interaction of the infant
and family throughout the initial hospital course to recognize concerns about the abil-
ity of the family to provide appropriate care. Additionally, variations from normal in an
infant’s health and behavior should be documented and communicated effectively by

Disclosure: None.
Neonatology, Louisiana State University Health Sciences Center, 200 Henry Clay Avenue, New
Orleans, LA 70118, USA
E-mail address: [email protected]

Pediatr Clin N Am - (2015) -–-

http://dx.doi.org/10.1016/j.pcl.2014.11.013 pediatric.theclinics.com
0031-3955/15/$ – see front matter Ó 2015 Elsevier Inc. All rights reserved.
2 Barkemeyer

all health care providers. Discharge examination of the newborn should be thorough
with documentation of adequate transition from the intrauterine environment to
include establishment of normal respirations, normal circulatory status, adequate
feeding, normal voiding and stooling patterns, and adequate thermoregulation. Infants
who fail to meet these criteria should not be discharged home and additional assess-
ment may be needed. Before hospital discharge, physical examination should include
assessment for the presence of a red reflex from the eyes bilaterally and for any evi-
dence of developmental dysplasia of the hip. The red reflex should be bilateral, sym-
metric, and without dark spots or white opacity.1 Female infants, infants born with
breech presentation, and infants with a family history of this disorder are at highest
risk for developmental dysplasia of the hip. When definite dislocation of the hip is
noted, prompt referral to an orthopedist is warranted; when the examination is equiv-
ocal, serial follow-up examinations are warranted. If necessary, further assessment for
developmental dysplasia of the hip can be performed with hip ultrasound.2 The effi-
cacy of these traditional recommendations for screening for developmental dysplasia
of the hip and common interventions has more recently been questioned.3

SCREENING TESTS

Routine screening of mothers and infants for a variety of common and uncommon
conditions has allowed for timely recognition and intervention resulting in ongoing sig-
nificant improvements in perinatal outcomes. Many of these screening tools are dis-
cussed in greater detail elsewhere in this issue, and appropriate follow-up of
abnormal results and pending studies is essential at hospital discharge. Follow-up
of all relevant maternal screening tests requires effective communication between ob-
stetric and newborn care providers. Timely identification of infants at risk for infection
based on maternal screening tests (including gonorrhea, syphilis, HIV, hepatitis B, and
group B streptococcus) should be accomplished in the immediate neonatal period,
and follow-up on all such tests and their impact on the infant should be done at the
time of discharge.
Although newborn metabolic screening results may not be available at the time of
hospital discharge, it is important that specimens are obtained before discharge
with proper follow-up mechanisms established. A hearing screen should be obtained
before hospital discharge with awareness of ongoing factors, such as infection,
ototoxic drug exposure, and severe jaundice, which may alter results. At-risk infants
should be identified with appropriate follow-up testing in place at discharge.4
Screening for congenital heart disease should be performed with pulse oximetry af-
ter the first 24 hours of life in all infants, with infants with oxygen saturations less than
90% being evaluated immediately for potential cardiac malformation if there is no
other obvious cause. Infants with oxygen saturations greater than or equal to 95%
and less than 3% difference in saturation between right hand and either lower extrem-
ity are considered to have passed this screen.5
Because it is known that preterm and other infants may have apnea, bradycardia,
and/or oxygen desaturation when placed semiupright in a car seat, it is recommended
that infants of gestational age less than 37 weeks and other at-risk infants (eg, Down
syndrome, hypotonia, congenital heart disease) undergo a period of observation in
their car seat before discharge. This period of observation should be 90 to 120 mi-
nutes, or more if travel duration is longer. Infants who experience problems during
this screen should be reassessed with changes in support or position to ensure safety.
Family members should be educated in the importance of proper use of car
restraints.6
 Discharge Planning 3

Jaundice is a common problem in newborn infants during the first few days of life,
which typically is self-limited or easily treated, but can put the infant at significant risk
for adverse neurologic outcome if not monitored appropriately for timely intervention.
Awareness of risk factors for excessive jaundice, such as hemolysis, excessive
bruising, or poor feeding, is important along with visual screening and transcutaneous
bilirubin determination. Transcutaneous bilirubin screening is noninvasive; relatively
inexpensive; and avoids inadequacies of visual screening, such as poor lighting,
poor color perception, or a newborn with darker skin tone. Comparison of screening
bilirubin values with available time-dependent bilirubin nomograms helps identify
higher-risk infants before hospital discharge. When transcutaneous bilirubin screening
suggests a need for therapy, serum bilirubin should be promptly obtained to make
appropriate clinical decisions. Infants who do not require intervention for hyperbiliru-
binemia and are otherwise ready for discharge may be safely discharged if timely
follow-up of subsequent bilirubin levels is available.7

FEEDING

It is commonly accepted that exclusive breastfeeding is the optimal feeding method

for infants for the first 6 months of life, and breastfeeding can continue beyond that
up to 12 months or longer as mutually desired by the mother and infant. Achievement
of higher sustained breastfeeding rates has significant medical benefits for infants and
their mothers along with significant economic benefits for families and society. There
are several barriers to effective breastfeeding including many within the birth hospital.
Common hospital practices that have a negative influence on successful breastfeed-
ing initiation include a lack of emotional and practical support for breastfeeding
mothers, delays in initiation or limitations on duration of breastfeeding, and early intro-
duction of supplemental formulas and pacifiers.8 Pacifiers have been associated with
a lower incidence of sudden infant death syndrome (SIDS), so if desired, their use
should be restricted until after breastfeeding is well-established.9
Throughout the hospital stay and at the time of discharge, the adequacy of the
mother’s ability to breastfeed her infant should be assessed. Mothers with prior breast
surgery, flat or inverted nipples, or difficult delivery are at greatest risk for problems in
establishing adequate breastfeeding. Assessment of the mother’s milk production, in-
fant feeding practices, voiding and stooling patterns, and serial infant weight are
needed. Because the establishment of breastfeeding is an ongoing process that typi-
cally continues after discharge, close monitoring of this evolution is necessary, espe-
cially for mother-infant pairs with suspicion or evidence of delays. Supplementation of
breastfeeding should be limited in duration and for defined conditions (persistent
hypoglycemia, dehydration as evidenced by inadequate voiding and stooling, and
excessive weight loss >10% of birthweight). Breastfed infants should receive supple-
mental vitamin D, 400 IU per day.
Infants who are not breastfed need to have their intake, output, and weight moni-
tored, although most infants quickly adapt to an ad lib intake. Mothers who decide
against or are unable to breastfeed their child should be supported in this process.
Formula-fed infants should receive an iron-fortified cow’s milk–based formula unless
there is a defined need for an alternative. There is no need for routine additional vitamin
D supplementation of formula-fed infants.

CIRCUMCISION

Circumcision of newborn male infants has been a topic of great discussion and pas-
sion for several years. Although some medical benefits of circumcision are definite,
4 Barkemeyer

opponents view any such benefits as limited given the risks and potential pain of the
procedure. Proponents have argued that the procedure affords lifelong benefits with
limited risk and can be safely done with appropriate anesthesia. In 2012, the American
Academy of Pediatrics issued a Circumcision Policy Statement that stated, “preven-
tive health benefits of elective circumcision of male newborns outweigh the risks of the
procedure.” Additionally, the policy states that circumcision lowers the risk of urinary
tract infection (UTI) and acquisition of HIV and other sexually transmitted diseases, but
these benefits are not so great to warrant routine circumcision for all male infants; if a
family desires circumcision for medical and cultural reasons, the procedure should be
safely done.
In addition to familiarity with the policy statements, such as that of the American
Academy of Pediatrics, health care providers should be prepared to answer a family’s
questions about this procedure. The three primary benefits of circumcision are a
reduced incidence of UTI, sexually transmitted diseases, and penile cancer. The num-
ber needed to treat for reduction of male UTI is 100, meaning that for every 100 circum-
cisions performed, one male UTI is prevented. Circumcision lowers transmission rates
for HIV, herpes simplex virus type 2, and human papilloma virus. Penile cancer is rare,
and current data to assess the impact of circumcision on risk are limited. Opponents to
circumcision question the supportive data indicating reduction in sexually transmitted
diseases and penile cancer are benefits of the procedure.
Circumcision done in the newborn period is generally safer and better-tolerated than
in older males. Circumcision should be done by an appropriately trained provider using
sterile technique. Appropriate anesthesia may include sucrose solution in addition to
topical anesthetic or injectable local nerve block. There is no clear advantage to any
of the three most commonly used techniques (Plastibell device, Gomco clamp, or Mo-
gen clamp). Bleeding is the most frequent complication of circumcision, but it is usually
limited. Significant complications are reported in 0.2% of all circumcisions. There is no
evidence for diminished sexual pleasure or performance as a result of circumcision.
Poor cosmetic outcome is a concern for some parents, but concerned parents should
be advised that appearance will likely evolve to a more acceptable one over time.
Despite the available medical data, the decision for circumcision for most families is
most strongly influenced by religious, cultural, and personal motives. At present, pay-
ment for the procedure by many third-party payors is limited.10–13

DISCHARGE OF THE LATE PRETERM INFANT

Lacking the physiologic maturity of the term infant, the late preterm infant is at higher
risk of problems, such as feeding difficulty, hypoglycemia, hyperbilirubinemia, hypo-
thermia, apnea, and respiratory distress. Because these infants lack some of the
more obvious acute problems of infants born at earlier gestation and they are often
managed in a regular nursery with full-term infants, a lack of awareness by caretakers
and families of the potential for these problems may result in ever greater risks of
morbidity and mortality. Additionally, there may be interplay between these problems,
such as a late preterm infant with hypothermia with resulting tachypnea and further
worsening of immature feeding processes, thus placing the infant at higher risk for hy-
poglycemia and hyperbilirubinemia.
The problems of the late preterm infant may not fully resolve at the time of
discharge, and infants may regress in what initially seemed to be a normal feeding
pattern. Sooner and more frequent outpatient follow-up may reduce the increased
risk for readmission that these infants face. Ideally, the late preterm infant should be
seen as an outpatient within 48 hours of discharge. At follow-up, close monitoring
 Discharge Planning 5

of feeding, voiding, and stooling is essential with serial weight measurements and
observation of jaundice also necessary. Ultimately, the late preterm infant is at
increased risk for developmental delays; close developmental follow-up is needed
to provide timely allied health therapy interventions.14,15

DISCHARGE OF THE PRETERM INFANT AFTER NEONATAL INTENSIVE CARE UNIT STAY

Discharge of the preterm infant after neonatal intensive care unit (NICU) stay requires
close attention to health care maintenance and follow-up for specific problems of pre-
maturity that may require visits to several physicians and therapists. Timing of
discharge for the complex infant is determined by the current stability and needs of
the infant; the ability of caregivers to meet those needs in the home setting; and
increasingly, outside pressures to limit duration of hospital stay. Thoughtful and thor-
ough discharge planning may help reduce the high risks for morbidity, mortality, and
hospital readmission these infants face.
In general, the preterm infant can be safely discharged from the NICU when the in-
fant is able to feed adequately to allow for appropriate weight gain; is able to maintain
appropriate body temperature without external heat sources; is able to receive any
additional necessary medical care or therapy in the home setting; and is able to be
cared for in a home with capable caretakers properly equipped with all necessary
nutrition, medications, and equipment. Determining the readiness of a particular infant
to meet each of these criteria depends on several variables in addition to gestational
age and weight. Infants may meet one criteria (eg, adequate thermoregulation) but not
another (eg, poor feeding); thus, it is not possible to routinely discharge a preterm in-
fant at a given gestational age and weight. Although most infants are able to be safely
discharged by 36 to 37 weeks postmenstrual age, some may be ready as early as 33 to
34 weeks, whereas others may require hospitalization well beyond these postmenst-
rual ages. Infants of lowest gestational age and birthweight are more likely to require
discharge at a later gestational age.16–18
Oral feedings are typically introduced to preterm infants around 33 to 34 weeks
postmenstrual age with appropriate maturation of the ability to coordinate sucking,
swallowing, and breathing. Gaining proficiency at oral feedings varies by infant and
depends on neurodevelopment and associated health problems; preterm infants
with neurologic impairment or chronic lung disease may have significant delays in
achieving proficiency at oral feeding. Gastroesophageal reflux is common in preterm
infants; for most preterm infants without other comorbidities, gastroesophageal reflux
is self-limited and typically does not require specific treatment. For preterm infants
with comorbidities, such as neurologic impairment, chronic lung disease, or apnea,
a variety of therapies for gastroesophageal reflux have been used including positional
maneuvers, thickened feedings, acid-suppression medication, or prokinetic medica-
tion. There is no consensus among a variety of pediatric specialists for the optimal
management of significant gastroesophageal reflux, but therapy should be provided
in stepwise fashion with ongoing assessment for improvement.
A pattern of adequate growth on a specific feeding regimen that can be mimicked at
home should be established before discharge. Breast milk is the optimal nutrition for
preterm infants throughout the hospital stay and after discharge. Breast milk typically
requires supplementation to augment calories, protein, sodium, and calcium intake in
the preterm infant. In the hospital setting, this is often accomplished through the addi-
tion of commercial human milk fortifiers. Postdischarge, supplementation if necessary
may be accomplished more economically by the addition of postdischarge formula to
human milk intake. For the preterm infant not feeding breast milk, a fortified 22 calorie/
6 Barkemeyer

ounce preterm infant formula should be used after discharge. The duration of time
postdischarge to use fortified human milk or 22 calorie/ounce preterm infant formula
is variable and depends on degree of prematurity, growth, and associated medical
problems, such as osteopenia. Infants born at less than 28 weeks gestation with
ongoing medical problems may benefit for 12 months adjusted age, whereas infants
of higher gestational age with few associated medical problems and steady growth
may limit duration to 6 to 9 months adjusted age. Weight, length, and head circumfer-
ence of the preterm infant after NICU discharge should be plotted regularly on growth
curves designed for preterm infants.
Infants born at lower gestational ages (<28 weeks gestation) with prolonged total
parenteral nutrition (TPN) use lack adequate bone mineralization at birth, which can
develop into osteopenia of prematurity. Preterm infants who receive full or partial
breast milk, or take in less than 1000 mL infant formula, should receive vitamin D,
400 IU daily.19
Despite advances in care for very low birthweight infants, nutritional care in the
NICU is unable to match growth rates achieved in utero. Postdischarge, growth needs
to be closely monitored with regular plotting of weight, length, and head circumfer-
ence against standardized curves for the preterm infant. Because many preterm in-
fants are at risk for developmental delay, it is essential that optimal nutrition for
brain growth be provided in the first year of life.
Among very low birthweight infants who require TPN for more than 14 days, approx-
imately 50% may develop TPN cholestasis with resultant elevation in direct bilirubin.
Although TPN cholestasis is the most common cause for direct hyperbilirubinemia in
the NICU population, there are a myriad of other potential causes for this problem that
should not be overlooked. The extent of evaluation for any single infant to rule out
other less common causes of elevated direct bilirubin is an individualized decision,
but more common anatomic, infectious, and metabolic causes should be investigated.
In most cases of TPN cholestasis, as feeds are resumed, a gradual resolution of the
elevated direct bilirubin occurs. This resolution may continue after hospital discharge,
necessitating serial laboratory observations to assess for return to normal of total and
direct bilirubin levels. In some infants with more significant TPN cholestasis, therapy at
hospital discharge may include specialty formulas with medium-chain triglycerides as
the source of lipids, drugs that may increase bile acid flow (phenobarbital, ursodeox-
ycholic acid), and fat-soluble vitamin supplementation (vitamins A, D, E, K).20
A common hematologic problem in preterm infants is anemia of prematurity, which
is an accentuation of the physiologic anemia that occurs in term infants, albeit sooner
after birth and with resultant lower hemoglobin concentrations. Depending on the pre-
term infant’s other problems of prematurity impacting oxygen delivery and oxygen
needs, anemia of prematurity is more likely to be symptomatic than what occurs in
term infants. During the acute stages of illness from prematurity, red blood cell trans-
fusion may be necessary to replace ongoing losses from blood sampling for necessary
laboratory tests. As the overall condition of the preterm infant improves closer to and
beyond hospital discharge, the threshold for transfusion is unknown. Repeated trans-
fusions late in the course of anemia of prematurity continue to delay recovery from this
problem because the infant’s own erythropoietin production is inhibited. In general,
the preterm infant discharged from the hospital with anemia of prematurity should
be monitored for adequate nutrition including sufficient iron in the diet, the absence
of obvious symptoms related to anemia (persistent tachycardia, poor weight gain),
and the gradual recovery of hemoglobin levels to normal. For infants with anemia of
prematurity, evidence of spontaneous increase in hemoglobin concentration coupled
with evidence of reticulocytosis is reassuring.
 Discharge Planning 7

Apnea of prematurity is a common problem in preterm infants, especially those born

at lower gestational ages. For most infants, resolution of apnea of prematurity occurs
around the same time that other maturational events occur (oral feeding, thermoreg-
ulation). For some preterm infants, apnea of prematurity may continue after maturation
in oral feeding and thermoregulation have occurred, thus delaying hospital discharge.
Management of such infants varies, but in general, all infants should have a period of 3
to 7 days free of significant apnea or bradycardia before discharge. In some cases,
methylxanthine therapy with caffeine or theophylline may be used to treat apnea of
prematurity. Caffeine has a higher therapeutic index and once-daily dosing, thus it
is the preferred drug for apnea of prematurity.
Apnea of prematurity typically resolves by 36 to 40 weeks postmenstrual age, but in
infants born at less than 28 weeks gestation, it may persist to 44 weeks postmenstrual
age. Management of infants otherwise ready for discharge who have ongoing minor
cardiorespiratory events caused by apnea of prematurity varies. Caffeine therapy
and/or home monitoring may be used to allow for earlier discharge of such infants. In
most cases, caffeine therapy and/or home monitoring can be discontinued after
44 weeks postmenstrual age. Gastroesophageal reflux may coexist with apnea of pre-
maturity in some infants, further complicating clinical assessment and decision making.
Although families may be concerned about potential links between apnea of prema-
turity and SIDS, the only link between these entities is that preterm infants are at
increased risk for both. There is no evidence that preterm infants with apnea of prema-
turity are at a higher risk of SIDS than preterm infants without apnea of prematurity.
Although acute management of preterm infants early in their hospital course may
require prone positioning, most infants should be placed supine to sleep by 32 weeks
postmenstrual age. The “Back to Sleep” campaign has reduced the rate of SIDS in
term and preterm infants (Box 1).21

THE PRETERM INFANT WITH SPECIAL NEEDS AFTER DISCHARGE

A small subset of preterm infants may have special needs after discharge beyond their
peers. Infants discharged on medications for ongoing medical problems, such as
bronchopulmonary dysplasia, apnea of prematurity, or other complications related
to prematurity, may require dosage adjustment for weight gain after discharge. Before
hospital discharge, a plan of management for such complicated patients should be
developed, including follow-up visits with pediatric specialists as needed to assist in
management decisions.
Infants who continue to have feeding difficulties may require alternative means of
feeding. In select instances, home gavage feedings may be used to allow for hospital
discharge of an infant expected to progress to full oral feedings in a short period of
time. Infants for whom home gavage feedings are used should be otherwise free of
significant medical problems and have parents who are willing, capable, and trained
to administer gavage feedings before discharge. Attempts at oral feedings should
be continued with the family trained in the necessary skills to do so.
For infants unable to feed orally and unlikely to make progress to do so in a reason-
able amount of time, placement of a feeding gastrostomy tube may be necessary. Par-
ents should be educated in the administration of gastrostomy tube feedings, care of
the gastrostomy site, and management when the gastrostomy tube is unexpectedly
displaced. For any alternative feeding method, necessary supplies and replacements
should be reliably provided.
Infants with severe bronchopulmonary dysplasia may require home oxygen therapy.
Caretakers should be educated in the set-up and administration of supplemental
8 Barkemeyer

Box 1
Primary care checklist for the preterm NICU graduate

Nutrition
Type, caloric density, volume, method of intake
Use of growth chart (preterm specific)
Current medications
Are they necessary?
Are the doses appropriate for current weight?
Immunizations
Are routine immunizations up to date?
Is infant a palivizumab candidate?
Respiratory
Any use of supplemental oxygen or aerosols?
Any current issues with apnea of prematurity?
Anemia of prematurity
Is there need for follow-up hemoglobin level?
Neurodevelopmental
What are results of prior cranial imaging studies?
Is there retinopathy of prematurity and is follow-up necessary?
Is follow-up hearing assessment needed?
Ongoing developmental screening
Car and home safety monitoring/guidance
Is family support appropriate for infant?
Other problems?
Other necessary follow-up?

home oxygen. Infants discharged on home oxygen therapy should be monitored with
either continuous pulse oximetry or cardiorespiratory monitoring to recognize compli-
cations that may result from unexpected loss of supplemental oxygen. A plan for
weaning home oxygen and appropriate follow-up should be established before
discharge and modified based on the infant’s condition.
Infants who require tracheostomy to establish an adequate airway are at risk for
complications after discharge. Families should be instructed in tracheostomy care
including suctioning, management of humidification and/or oxygen supplementation,
and emergency tracheostomy replacement. Instruction should include assessment of
independent skills in tracheostomy management. A care plan with outpatient subspe-
cialty support should be established before discharge. As with all other specialty
equipment, procurement of appropriate supplies before discharge is essential.
Intraventricular hemorrhage occurs inversely with gestational age, with significant
intraventricular hemorrhage highest in infants of gestational age less than 28 weeks.
Significant intraventricular hemorrhage (grades III or IV) is an important cause of
adverse neurologic outcomes including mental retardation, cerebral palsy, or hydro-
cephalus. In most cases of posthemorrhagic hydrocephalus, the evolution of the
 Discharge Planning 9

problem and need for cerebrospinal fluid diversion (most often through ventriculoper-
itoneal shunt placement) occurs during the initial hospital stay. In some infants, evo-
lution of hydrocephalus may continue after discharge necessitating serial
evaluations of ventricular enlargement by head ultrasound or other neuroimaging
studies. Assessment of head growth in all discharged preterm infants is an important
part of ongoing follow-up to recognize inadequate or excessive head growth in a
timely fashion.
Similar to other problems of prematurity, retinopathy of prematurity is most signifi-
cant in infants born at lower gestational ages and full resolution of the problem may not
occur until after hospital discharge. Most infants born at less than 28 weeks gestation
develop retinopathy of prematurity, but most cases resolve without intervention and
without visual loss. Timely recognition of retinopathy of prematurity is essential
because current interventions with cryotherapy and/or intraocular bevacizumab if
necessary can significantly improve visual outcomes when offered at optimal time.
Unnecessary delays in referral, screening, or intervention can result in unnecessary
blindness. It is essential that discharge plans for follow-up of infants at ongoing risk
for retinopathy of prematurity be communicated effectively with parents and to the pri-
mary care physician; need for follow-up should be reinforced regularly with primary
care follow-up visits.22
The most complicated preterm infant may remain medically fragile even after hos-
pital discharge. Often these infants have illness involving multiple organ systems
that may require various combinations of medications, oxygen therapy, respiratory
support, specialty feedings, and multiple pediatric subspecialty follow-up visits.
Although the complexity of illness involving any individual organ system may go
beyond what is cared for by the general pediatrician, the general pediatrician as pri-
mary care provider is often placed in the role of gatekeeper or coordinator of care.
It is essential that timely and thorough communication between the subspecialists
and pediatrician be in place. In the role of primary care provider, the pediatrician
must also assume the role of patient advocate for these complicated infants. Rehospi-
talization is much more common for the medically complicated infant because of ex-
acerbations of existing problems or development of intercurrent illness, such as
respiratory or gastrointestinal viral infections. Avoidance of sick contacts, frequent
hand washing, and appropriate immunizations are essential to minimize the risk of
intercurrent illness.

OUTCOME FOR THE PRETERM INFANT

Although the rate of preterm birth in the United States has declined slightly in recent
years, births before 37 weeks gestation accounted for 11.6% of all births in 2012,
with births of low birthweight infants (<2500 g) accounting for 8% of all births. Although
all preterm infants have higher risks of short- and long-term complications compared
with term infants, the greatest risk for mortality and long-term morbidity occurs in very
low birthweight infants (<1500 g), which accounted for 1.4% of all United States de-
liveries in 2012 (Table 1).23
Improvements in neonatal care have allowed for progressive improvements in sur-
vival of preterm infants with survival rates for infants in the National Institute of Child
Health and Human Development Neonatal Research Network ranging from 6% at
22 weeks gestation to 92% at 28 weeks gestation. Morbidity and mortality continue
to be highest at the lower gestational ages. In general, lower gestational age and
greater severity of short-term morbidities are associated with higher risks of long-
term adverse neurodevelopmental outcome. Female gender, antenatal steroid use,
10 Barkemeyer

Table 1
Gestational age-specific outcome from National Institute of Child Health and Human
Development network NICUs

Gestational Age 22 wk 23 wk 24 wk 25 wk 26 wk 27 wk 28 wk
Survival to discharge 6 26 55 72 84 88 92
Survival without major morbiditya 0 8 9 20 34 44 57
a
Severe intraventricular hemorrhage, periventricular leukomalacia, bronchopulmonary dysplasia,
necrotizing enterocolitis, infections, and retinopathy of prematurity stage 3.
Adapted from Stoll BJ, Hansen NI, Bell EF, et al. Neonatal outcomes of extremely preterm infants
from the NICHD neonatal research network. Pediatrics 2010;126:443–56.

maternal education at or above high school, and the absence of major neonatal mor-
bidities have been identified as independent predictors of unimpaired outcome at
30 months of age.24
Preterm infants born beyond 28 weeks are at limited risk for adverse medical and
neurologic outcome when compared with infants born at lower gestational ages,
with most infants born beyond 28 weeks gestation having normal outcomes. Despite
the higher likelihood of normal outcome, because the risk of adverse outcome remains
higher in this subgroup than that of term infants, close medical and developmental
follow-up by the primary care physician is warranted.
Because of significantly higher risks of adverse medical and neurologic outcomes
for infants born less than or equal to 28 weeks gestation, these infants require close
follow-up for ongoing medical problems and neurodevelopmental impairment. High-
risk follow-up clinics offer multidisciplinary resources that may be helpful in the
ongoing evaluation and therapy for such infants. Most such high-risk clinics offer in
depth neurodevelopmental follow-up, and some may also offer primary or specialty
care for the NICU graduate. For infants who meet established inclusion criteria, referral
to high-risk follow-up clinic should be done before hospital discharge.
Early intervention programs in the United States are federally funded programs
administered by states to provide timely evaluation and intervention for infants from
birth through 2 years of age who are experiencing developmental delays or at high
risk for developmental delays based on established physical or mental conditions.
Criteria for evaluation and services provided vary by state, but most high-risk NICU
graduates meet these criteria.

THE HIGH-RISK FAMILY

For the family of any infant requiring NICU care, the hospital course and discharge
planning process can be a stressful time. Even well-adjusted families need guidance
and support through this difficult process. Families with independent risk factors for
adverse outcomes, such as poverty, lack of education, lack of social support, domes-
tic abuse, or substance abuse, may require extra resources and support leading up to
and after discharge.
Families should be encouraged to visit their hospitalized child frequently, and they
should be kept abreast of their child’s problems and management plans. As the in-
fant’s condition stabilizes and especially as the time for discharge nears, the family
should have progressive involvement in their child’s care. Rooming-in opportunity
should be provided for all parents, and mandated for at-risk parents or parents of in-
fants with complex home care requirements. Postdischarge, resources that may aid in
transition include early and frequent follow-up with the primary care provider, home
health nursing, lactation specialist, and other available community support agencies.
 Discharge Planning 11

In support of proper transition of care from the NICU to the home setting, effective
communication of pertinent details from the hospital course to follow-up physicians
and other care providers is important. Summarizing a lengthy NICU stay in a document
that is understandable, is not too long, and provides relevant information for ongoing
care is a skill that should be mastered by the neonatologist. In providing such a sum-
mary, the more practical details provided involve ongoing care rather than extensive
details of resolved problems. Resolved problems are relevant, but should be
mentioned in summary format. Electronic medical record access can be useful to
identify more detailed information when necessary.
Care and support of the sick infant through a NICU stay requires an extensive
amount of resources. For improved long-term outcomes to occur, successful transi-
tion of the high-risk infant from the hospital to home setting is necessary, including
transition of care from the neonatologist to the primary care physician.

REFERENCES

1. American Academy of Pediatrics Section on Ophthalmology. Red reflex examina-

tion in neonates, infants, and children. Pediatrics 2008;122:1401–4.
2. Clinical practice guideline: early detection of developmental dysplasia of the hip.
Subcommittee on Developmental Dysplasia of the Hip. American Academy of Pe-
diatrics. Pediatrics 2000;105:896–905.
3. Shipman SA, Helfund M, Moyer VA, et al. Screening for developmental dysplasia
of the hip: a systematic review for the US preventive services task force. Pediat-
rics 2006;117:e57–76.
4. American Academy of Pediatrics Joint Committee on Infant Hearing. Year 2007
position statement: principles and guidelines for early hearing detection and
intervention programs. Pediatrics 2007;120:898–921.
5. Mahle WT, Newburger JW, Matherne GP, et al. Role of pulse oximetry in exam-
ining newborns congenital heart disease: a scientific statement from the AHA
and AAP. Pediatrics 2009;124:123–36.
6. Bull MJ, Engle WA. Safe transportation of preterm and low birth weight infants at
hospital discharge. Pediatrics 2009;123:1424–9.
7. American Academy of Pediatrics Subcommittee on Hyperbilirubinemia. Clinical
practice guideline: management of hyperbilirubinemia in the newborn infant 35
or more weeks gestation. Pediatrics 2004;114:297–316.
8. Eidelman AI, Schanler RJ. American Academy of Pediatrics section on breast-
feeding. Breastfeeding and the use of human milk. Pediatrics 2012;129:e827–41.
9. Hauck FR, Omojokun OO, Siadaty MS. Do pacifiers reduce the risk of sudden in-
fant death syndrome? A meta-analysis. Pediatrics 2005;116:e716–23.
10. American Academy of Pediatrics Task Force on Circumcision. Circumcision pol-
icy statement. Pediatrics 2012;130:585–6.
11. American Academy of Pediatrics Task Force on Circumcision. Male circumcision.
Pediatrics 2012;130:e756–85.
12. Frisch M, Aigrain Y, Barauskas V, et al. Cultural bias in the AAP’s 2012 technical
report and policy statement on male circumcision. Pediatrics 2013;131:796–800.
13. American Academy of Pediatrics Task Force on Circumcision. Cultural bias and
circumcision: the AAP task force on circumcision responds. Pediatrics 2013;
131:801–4.
14. Engle WA, Tomashek KM, Wallman C, Committee on Fetus and Newborn, Amer-
ican Academy of Pediatrics. Late-preterm infants: a population at risk. Pediatrics
2007;120:1390–401.
12 Barkemeyer

15. Kugelman A, Colin AA. Late preterm infants: near term but still in a critical devel-
opmental time period. Pediatrics 2013;132:741–51.
16. American Academy of Pediatrics Committee on Fetus and Newborn. Hospital
discharge of the high-risk neonate: proposed guidelines. Pediatrics 1998;102:
411–7.
17. American Academy of Pediatrics Committee on Fetus and Newborn. Hospital
discharge of the high-risk neonate. Pediatrics 2008;122:1119–26.
18. Andrews B, Pellerite M, Myers P, et al. NICU follow-up: medical and develop-
mental management age 0-3 years. Neoreviews 2014;15:e123–32.
19. Abrams SA, American Academy of Pediatrics Committee on Nutrition. Calcium
and vitamin D requirements of enterally fed preterm infants. Pediatrics 2013;
131:e1676–83.
20. Feldman AG, Sokol RJ. Neonatal cholestasis. Neoreviews 2013;14:e63–73.
21. American Academy of Pediatrics Task Force on Sudden Infant Death Syndrome
Policy Statement. SIDS and other sleep-related infant deaths: expansion of rec-
ommendations for a safe sleeping environment. Pediatrics 2011;128:1030–9.
22. American Academy of Pediatrics Section on Ophthalmology Policy Statement.
Screening examination of premature infants for retinopathy of prematurity. Pediat-
rics 2013;131:189–95.
23. Martin JA, Hamilton BE, Osterman MJ, et al. Births: final data for 2012. Natl Vital
Stat Rep 2013;62:1–69, 72. Available at: http://www.cdc.gov/nchs/data/nvsr/
nvsr62/nvsr62_09.pdf. Accessed September 23, 2014.
24. Stoll BJ, Hansen NI, Bell EF, et al. Neonatal outcomes of extremely preterm infants
from the NICHD neonatal research network. Pediatrics 2010;126:443–56.