Premature Infant Follow-Up

Description

Other Names

Extreme prematurity
Very low birth weight

Common Terms Used to Describe Prematurity provides frequently used definitions for some of the many terms used to describe prematurity.

Diagnosis Coding

ICD-10

P07.0x, extremely low birth weight newborn (up to 999 grams)

P07.1x, other low birth weight newborn (1000 - 2499 grams.)

P07.2x, extreme immaturity of newborn (through 27 completed weeks)

P07.3x, preterm (premature) newborn (28 - 36 6/7 completed weeks)

The last digit, represented above as an "x," signifies the need for further coding details of weight or gestational age. ICD-10 Coding Reference for Disorders of Newborn Related to Short Gestation and Low Birth Weight provides these details.

Description

Premature Infant
AJ Photo/Science Photo Library
Babies are surviving increasingly premature births due to the dramatic improvements in neonatal intensive care and the use of prenatal steroids, surfactant, continuous positive airway pressure (CPAP), and improved neurodevelopmental care techniques. This module focuses on the care of infants born at extremely low gestational ages and weights - typically at or less than 26 weeks and/or 1500 grams (about 3 pounds) - although much of this information will also pertain to preterm infants born later in gestation. Premature infants, particularly those born extremely early often have, or are at risk for developing, bronchopulmonary dysplasia, retinopathy of prematurity, intraventricular hemorrhage, hypoxic-ischemic encephalopathy (HIE), necrotizing enterocolitis, and other complications that require follow-up in the neonatal period and beyond. The medical home will often need to manage supplemental oxygen, feedings through gastrostomy or jejunostomy tubes, specialized immunizations, and specialized formulas, as well as coordinate the care provided by multiple subspecialists and/or developmental therapists. Specialized preterm infant follow-up clinics are becoming more available and can help detect and address complications.

Prevalence

The preterm birth rate (< 37 weeks) in the United States in 2013 was 11% [Martin: 2015]; the rate of infants born at less than 27 weeks was 1%. [McCormick: 2011]

Genetics

The most salient genetic risk factor for premature delivery is that women who have had one infant born prematurely are at higher risk for a second premature infant. This risk increases with decreasing gestational age of the first premature child. While the overall rate of prematurity is 12% in the United States, the rate for African American women is 17.7%. [Loftin: 2012] This risk factor is found in studies that have controlled for economic status, maternal education, and coexistence of other maternal medical risk factors. Additionally, women born prematurely have an increased risk of delivering their own infant prematurely. [Porter: 1997]

Prognosis

Prematurity is the leading cause of infant mortality in the US. [Klebanoff: 2011] Of all infant deaths in the US in 2006, 54% occurred in the 2% of infants born at less than 32 weeks gestation. Despite this, survival and outcomes for children born very prematurely have improved dramatically over the past four decades. Associated morbidities can occur following delivery or may unfold as chronic disabilities, such as cerebral palsy, cognitive impairment, vision and hearing impairment, feeding disorders, cardiac or respiratory conditions, and/or behavioral disabilities. Based on multi-centered, longitudinal studies, 12-15% of children born at less than 26 weeks will have cerebral palsy and approximately 50% will have significant intellectual disability (IQ <70). Primary care clinicians have unique opportunities to prevent or limit secondary disabilities in preterm infants and to help prevent subsequent preterm deliveries in the family. [Mikkola: 2005] [Hintz: 2011] No data yet exists on what percentage of infants with extreme prematurity end up with no significant complications.

Roles Of The Medical Home

Often, during prolonged NICU hospitalizations, families become attached to and dependent upon the NICU staff, which can make the transition to primary care difficult. To help with the transition, the medical home clinician ideally would communicate with parents and the NICU staff, or visit with the infant, prior to NICU discharge. The initial visit, whether at discharge or within 1-2 days of leaving the hospital, also enables the primary care clinician to:
  • Establish a baseline weight, which helps guide feeding adjustments over time.
  • Provide additional training and reassurance about infant care outside of the hospital setting.
  • Educate families about additional medications and supplies that may be needed at home.
  • Update vaccinations as needed (family members can be encouraged to obtain vaccines as well) - Guidance on immunizing former premature infants can be found in a Clinical Report from the American Academy of Pediatrics’ Committee on Infectious Diseases. [Saari: 2003]
Ongoing medical home care includes coordination of care specialists, studies, and programs such as a Neonatal Follow Up Program to avoid service duplications. Ideally, subspecialty follow up, such as with cardiology and ophthalmology, should be indicated on the NICU discharge summary.

Practice Guidelines

Phillips RM, Goldstein M, Hougland K, Nandyal R, Pizzica A, Santa-Donato A, Staebler S, Stark AR, Treiger TM, Yost E.
Multidisciplinary guidelines for the care of late preterm infants.
J Perinatol. 2013;33 Suppl 2:S5-22. PubMed abstract / Full Text

Helpful Articles

Berger SP, Holt-Turner I, Cupoli JM, Mass M, Hageman JR.
Caring for the graduate from the neonatal intensive care unit. At home, in the office, and in the community.
Pediatr Clin North Am. 1998;45(3):701-12. PubMed abstract
Reviews basic concepts such as providing developmentally supportive care for the premature infant in respect to the immature central nervous system, understanding the functions and systems of community based early intervention services, and the medical management of NICU graduates living at home who are technology-dependent.

Ritchie SK.
Primary care of the premature infant discharged from the neonatal intensive care unit.
MCN Am J Matern Child Nurs. 2002;27(2):76-85. PubMed abstract
Covers the basic principles of growth, nutrition and feeding, development, and complications common to premature infants. Additionally, the NICU to home transition is addressed as well as the unique early behaviors and cues common to the preterm infant.

University of Washington and Mary Bridge Hospital and Health Center .
Low Birth Weight Neonatal Intensive Care Unit Graduate .
Washington State Consensus Project. Sept. 1998 / Updated 2005. / http://www.medicalhome.org/4Download/cec/CEC.pdf
Education and support for health care providers, parents, third-party payers, and policy makers interested in care of low birth weight infants and children.

TeKolste T, Bragg J, Wendel S.
Extremely Low Birth Weight NICU Graduate.
2004; Washington State Department of Health, Children with Special Health Care Needs Program; http://www.medicalhome.org/4Download/cec/elbw.pdf
Supplement to: Low Birth Weight Neonatal Intensive Care Graduate. Specifically addresses post-NICU care of ELBW infants who: 1) experienced the usual complications associated with extreme prematurity and/or extreme low birth weight, and 2) were discharged home in a relatively healthy condition.

Clinical Assessment

Screening

Confirm that the following were performed or indicated as outpatient:
  • Newborn screening - For information about the conditions tested, see the Portal’s Newborn Disorders.
  • Hearing screening - For more information on how hearing is tested and normal milestones for hearing and language, see the Portals Hearing Testing.
  • Car seat testing - Oximetric evaluation of ability to safely transport in car seat vs. car bed should be performed, may need to repeat this evaluation in outpatient clinic.
  • Congenital heart disease screening - Pre- and post-ductal oximetry may suggest congenital heart disease; an echocardiogram would help confirm anatomy.
  • Screening for developmental dysplasia of the hip (DDH) - Pelvic (hip) ultrasonography screens for DDH for infants born breech or with concerning findings on routine hip exam. For premature breech infants, timing of the hip ultrasound may be adjusted to 4-6 weeks for corrected post-gestational age. Screening for Developmental Hip Dysplasia—Clinical Algorithm (AAP) [Committee: 2000] provides recommendations for timing for screens and follow-up actions.

Of Family Members

Postpartum depression is 3 times more likely to occur in mothers of preterm infants than in mothers of full-term infants. [Phillips: 2013] Examples of Standardized Screening Tools are: Given the peak times for postpartum depression, screening should be integrated at the 1-, 2-, 4-, and 6-month visits. [Earls: 2010] Management of positive screens and additional information can be found at Maternal Depression Screening.

For Complications

According to the AAP’s recommended schedule for developmental screening (see the Portal’s Developmental Screening page), the primary care clinician should perform developmental screening at the child’s adjusted age rather than chronologic age until reaching 30 months (or 24 months if there will be no 30-month-old evaluation). Children enrolled in Neonatal Follow-up Programs will undergo formal developmental testing through the program. Other screens to consider include:
  • Serial ophthalmologic evaluations to screen and monitor for retinopathy of prematurity
  • Head ultrasonography to screen for intraventricular hemorrhage, hydrocephalus, structural anomalies, etc. Infants born at 30 [Lahood: 2007] - 32 weeks [Sauve: 2001] gestation or earlier, may benefit from routine cranial ultrasound examinations at 7-to-10 days of age and at 36-to-40 weeks' postmenstrual age. [Sauve: 2001] [Nwafor-Anene: 2003]
  • Hemoglobin/hematocrit to screen for anemia. Be aware of timing of blood transfusions and if the infant is receiving iron supplementation.
Consider additional screening for autism or for disorders of hyperactivity and the ability to focus. (See the Portal's Infant Social-Emotional (Autism) Screening and Developmental Screening for information about response to positive screens.)

Comorbid Conditions

Numerous problems related to prematurity or complications related to care needed in the NICU may persist and require attention and care in the outpatient setting:
  • Developmental delays: According to the AAP’s recommended schedule for developmental screening (see the Portal’s Developmental Screening page), the primary care clinician should perform developmental surveillance and screening at the child’s adjusted age rather than chronologic age until reaching 30 months. Formal developmental screening tools should be used at the 9, 18, and 30 month health supervision visits. [Hagan: 2008] Children enrolled in Neonatal Follow-up Programs will also undergo formal developmental testing through the program.
  • Sensory disorders (hearing or vision impairment): Serial ophthalmologic evaluations are performed to screen and monitor for retinopathy of prematurity. This condition primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less who are born before 31 weeks of gestation. [National: 2015] Hearing screening is typically performed prior to discharge in the NICU, but diagnostic audiology testing is recommended by 24-30 months for all infants who stayed in the NICU 5 days or more, or who have other risk factors or parental concerns. [Harlor: 2009] See Hearing Testing for more information.
  • Feeding problems and growth difficulties: See the Portal's Feeding and Gastrointestinal Issues of the Preterm Infant
  • Neuro-behavioral difficulties, including autism and ADHD [Wong: 2014] [Lindström: 2011]: Autism screening should be performed at the 18 month and again at either the 24 or 30 month visits. [Johnson: 2007] At any time if caregivers are concerned about the child’s emotional and or behavioral development, consider further evaluation for autism, attention, or mood disorders. (See Infant Social-Emotional (Autism) Screening for information about response to positive screens.)
  • Neurological disorders, including cerebral palsy, attention deficits, and seizures: Head ultrasonography is typically used screen premature infants for intraventricular hemorrhage, hydrocephalus, structural anomalies, etc. Infants born at 30 [Lahood: 2007] - 32 weeks [Sauve: 2001] gestation or earlier, may benefit from routine cranial ultrasound examinations at 7-to-10 days of age and at 36-to-40 weeks' postmenstrual age. [Sauve: 2001] [Nwafor-Anene: 2003]
  • Head shape deformities (from limited independent head mobility in very young infants or congenital muscular torticollis; less frequently, from craniosynostosis)
  • Musculoskeletal problems related to cerebral palsy or developmental dysplasia of the hip
  • Cardiovascular disorders, including patent ductus arteriosus and persistent pulmonary hypertension. Implementation of universal screening for congenital heart disease is helping identify some but not all cardiovascular lesions.
  • Hypertension: Due to increased risk of developing hypertension, blood pressure monitoring of premature infants is recommended at all routine visits. [Norman: 2010] Persistently hypertensive infants or children may require medications or specialist consultations. Adolescents with history of prematurity remain at increased risk of hypertension. [de: 2012]
  • Respiratory disorders, including apnea, chronic lung disease of prematurity (formerly known as bronchopulmonary dysplasia), and oxygen dependence
  • Gastrointestinal disorders, including dysphagia, reflux, and surgically related bowel disorders
  • Anemia: Be aware of timing of prior blood transfusions and if the infant receives iron supplementation through formula and/or supplements. Hemoglobin/hematocrit is often used to screen for anemia; however, iron studies, reticulocyte counts, or ferritin will increase sensitivity for at-risk infants.
  • Endocrine disorders, including hypoglycemia and cortisol deficiency
  • Urological problems such as undescended testes, hernias, or stones
  • Infections such as RSV that can lead to increased risk of subsequent hospitalization
  • Birth-related trauma

Pearls & Alerts

Abnormal tone in infants is often misinterpreted

It is critical to monitor muscle tone closely and pay attention to parental reports of “early standing,” “strong legs,” or early handedness. Though these things make parents feel proud, they are red flags for increased tone.

Terms describing age and birth weight are not always standard

Many terms are used to describe prematurity. A list of commonly used words and definitions can be found at Common Terms Used to Describe Prematurity.

History & Examination

Family History

A maternal history including medication and substance use, history of prior pregnancy complications, and chronic medical conditions helps determine risk for having another premature infant. If subsequent children are desired, referral to appropriate obstetric experts (maternal-fetal medicine) will help the mother plan for a safe delivery. Mothers who were themselves born prematurely also are at increased risk of giving birth prematurely. [Institute: 2007] Premature birth prevention programs may be available in certain areas. See the Portal’s page Prevention of Recurrent Preterm Birth.

Current & Past Medical History

The NICU discharge summary is the primary source of medical details; however, the caregiver’s story also is vital in determining family priorities.

The following items from the discharge summary warrant special attention in primary care follow-up:
  • Cardiac and/or respiratory arrest
  • Heart murmur that is still present at discharge and cause, if known
  • Necrotizing enterocolitis (NEC) with perforation
  • Chronic lung disease of prematurity/bronchopulmonary dysplasia
  • Prolonged period on ventilator for respiratory failure (beyond the time of initial stabilization of the transitioning infant)
  • Discharged on home oxygen
  • Evaluation for and, if present, the degree of retinopathy of prematurity
  • Failed hearing screens and follow-up instructions
  • Intraventricular hemorrhage grade. While all level bleeds I-IV represent an adverse event in the brain, grades III and IV are associated with a significantly increased risk for neurodevelopmental impairment)
  • Periventricular leukomalacia
  • Hydrocephalus
  • Evidence of cerebellar injury
  • Neonatal seizures
  • Hypoxic ischemic encephalopathy
  • Current feeding plan, dietary supplements, and need for feeding therapy and/or tube feedings
  • Surgical scars
Premature infants may have episodes of apnea and bradycardia. For families monitoring at home, inquire about bradycardia frequency, duration, and interventions.

Developmental & Educational Progress

Even those with normal intelligence and cognitive scores can have subtle learning disabilities that affect functioning in the regular classroom and require additional educational support for the child. Following records of developmental screenings and evaluations, progress with early intervention or developmental therapies, and educational assessments and performance enables early recognition of problems and the need for further intervention.

Social & Family Functioning

Assess family functioning, postpartum depression, and confidence in performing the infant’s cares at home.

Physical Exam

General

In the first two years, make judgments about typical or atypical findings based on the adjusted age (not the chronological age), particularly for the neurologic exam.

Vital Signs

Assess blood pressure periodically, monitoring for hypertension. Use blood pressure norms for premature infants up to 44 weeks post-conception age. [Dionne: 2012] Use blood pressure norms for premature infants up to one year of age. Pediatric Hypertension (Medscape) provides Normal Blood Pressure Percentile Curves for Older Infant s from [Lowry: 1971]; to access click “Tables” on left menu. Blood pressure norms for these ages are still under study. See [Nickavar: 2014] for more discussion.

Oxygen saturation is measured for infants requiring supplemental oxygen. Saturation measurements should indicate whether supplemental oxygen was used during the oximetry. For infants whose eyes have not fully vascularized, oxygen saturation may be maintained in a lower range as recommended by their NICU team or ophthalmologist.

Respiratory rate generally follows corrected gestational age norms. [Trachtenbarg: 1998]

Heart rate generally follows chronological age norms. [Trachtenbarg: 1998]

Growth Parameters

Plot measurements for preterm infants weighing 1500 grams or more by chronological age on a standardized growth chart for term infants, and then correct back for adjusted age. This can be continued until the child reaches 2 years of age when plotting solely by chronological age becomes appropriate.

Skin-fold measurements can help identify older children who may be “overfat” despite “normal weight,” due to low muscle mass and bone density, such as in non-ambulatory children. See Growth Charts for Premature and Low Birth Weight Infants.

Skin

Surgical scars and traumatic scars from intravenous (IV) infiltrations and other mishaps related to very fragile skin may be seen. If the infant has an ostomy, periodically visualize the skin around the tube by removing the dressing. See Feeding Tubes and Gastrostomies and Tracheostomy.

Surgical scars and traumatic scars from intravenous (IV) infiltrations and other mishaps related to very fragile skin may be seen.
  • PDA ligation results in a relatively large scar on the left posterior and lateral chest wall.
  • Inguinal hernia repair scars are often hard to detect as they are made along the skin fold lines in the groin.
  • Incision scars related to IV catheters may be found on the wrists and ankles.
  • Exploratory laparotomy and resection of bowel due to necrotizing enterocolitis (NEC) may leave abdominal scars.

HEENT

  • Visually inspect for plagiocephaly or asymmetry
  • Palpate for premature fusion of sutures (craniosynostosis, or early closure of one or more cranial sutures, is far less common for both preterm and term infants but can look similar to some types of deformational abnormalities.) See Evaluating and Managing Head Shape.

Mouth/Teeth

Inspect palate, tongue, uvula, buccal mucosa, gums, as well as emerging dentition.

Chest

Assess rate and work of breathing, including retractions or nasal flaring, wheezing or stridor.

Heart

Assess rate, rhythm, and pulses. Note the grade (1-6) of any murmurs. The most common heart murmurs heard in premature infants include the patent ductus arteriosus and physiologic peripheral pulmonary stenosis, but murmurs associated with congenital heart disease are also common. Murmurs often come and go within the first 18 months of life and often are benign. Seek further evaluation in murmurs that sound ominous, that worsen over time, or are associated with feeding difficulties, respiratory distress, poor growth, sweating while feeding, tachycardia, and tachypnea. Demonstrations: Heart Sounds & Murmurs (University of Washington) has audio demonstrations of various murmurs.

Abdomen

Assess for bowel sounds, abdominal distension or masses, hepatosplenomegaly. Monitor for gradual resolution of umbilical hernias and diastasis recti.

Genitalia

In females: Monitor inguinal hernias (more common in premature infants).

In males: Monitor for inguinal hernias and hydroceles (both are more common in premature infants) and undescended testes. Cryptorchism is more common in premature versus term baby boys, but also has a higher rate of spontaneous descent (80-90%) within the first year of life.

Extremities/Musculoskeletal

Evaluate for dislocation or subluxation of hips. Assess general appearance of extremities and spine, noting any congenital malformations.

Neurologic Exam

The neurologic exam is very sensitive to gestational age and to the state of the child. The basic neurologic exam, including cranial nerves, muscle strength, tone, and deep tendon reflexes, should be performed routinely and documented to allow ready tracking of progress. Motor delays, before 1 year adjusted, are not uncommon and warrant further evaluation. [Wilson: 2004] [D'Agostino: 2010]

Testing

Sensory Testing

Hearing testing
Recommended ages for follow-up testing include (adjusted ages):
  • 9 months
  • 2 ½ years
  • 4 ½ years
At 9 months, the evaluation includes tympanometry to assess middle ear function, otoacoustic emissions (OAE) to assess cochlear function, and visual reinforcement audiometry (VRA) to assess the baby’s behavioral response to sounds. If normal hearing cannot be established using these tests, auditory brainstem response testing (ABR) is completed. At 2½ and 4½ years, VRA testing is usually replaced by conditioned play audiometry (CPA) under earphones to establish more complete audiological information.
Infants who did not pass a hearing test in the NICU should have repeat testing completed at 4 months, adjusted age. In addition, graduates with the following histories should be tested more frequently:
  • Hypoxic-ischemic encephalopathy (HIE)
  • Extracorporeal membrane oxygenation (ECMO) use
  • Meningitis
  • Congenital cytomegalovirus (CMV)
  • Hyperbilirubinemia (specifically for infants with history of total serum bilirubin >=20, a brainstem auditory evoked response (BAER) test is recommended within 3 months of birth) [Phillips: 2013]
  • Craniofacial abnormalities
  • Family history of childhood hearing loss
  • Parental concerns
  • Chronic otitis media
Lastly, if a child’s speech and language skills are not meeting milestones, additional hearing testing may be completed to ensure continuation of normal hearing and absence of middle ear pathology. See Hearing Loss & Deafness in Newborn Disorders and Hearing Loss and Deafness in Diagnoses & Conditions for more information on these topics.

Vision testing
Follow-up assessments for retinopathy of prematurity (ROP) are based on initial findings. Initial ROP screening typically takes place in the NICU and should be completed at 32-weeks postmenstrual age or 5-weeks postnatal age, whichever comes last. See the Portal's Retinopathy of Prematurity issue page for information about risk factors and treatment considerations.

All infants born weighing 1500 grams or less, as well as those affected by intraventricular hemorrhage (IVH), should be considered for ophthalmology referral. Infants enrolled in state and hospital NICU follow-up programs may access ophthalmology services through that program.

Other Testing

Cognitive and Motor Testing
Children enrolled in state and hospital NICU or neonatal follow-up programs will access testing at specific periods, although there is no national standard for which tests to use. Tests include:
  • Peabody Developmental Motor Scales
  • Bayley Scales of Infant Development (BSID-III)
  • IQ tests (such as the Wechsler Preschool and Primary Scale of Intelligence (WPPSI)
More in depth testing may be performed through Early Intervention, the public school district, and developmental specialists.
Communication Testing
Children enrolled in a Neonatal Follow-up Program are typically evaluated at set intervals by a speech language pathologist. If difficulties are identified, children are referred for treatment provided through Early Intervention, developmental preschools, or the private sector.

Subspecialist Collaborations & Other Resources

Neonatal Follow-up Programs (see Services below for relevant providers)

Referral is typically done by the NICU based on inclusion criteria such as extreme prematurity. Primary care clinicians can also refer eligible premature infants to obtain additional assessment and care coordination. Services/disciplines offered may include medical evaluation, physical therapy and/or, occupational therapy, and developmental psychology, audiology, ophthalmology, speech pathology, neurology, nutrition, and social work

Early Intervention Programs (see Services below for relevant providers)

Refer when an infant or toddler under 36 months of age needs further assessment for possible developmental delays in cognitive, social, communication, and/or motor skills. Premature infants may qualify for Early Intervention based solely on their risk of developmental delays.

Developmental Pediatrics (see Services below for relevant providers)

Refer for assistance in evaluating children with more complex developmental and behavioral problems. They assist with an overall diagnosis and help with specific recommendations for therapy, but do not typically provide ongoing primary care.

Pediatric Physical Medicine & Rehab (see Services below for relevant providers)

Refer to pediatric rehabilitation (“rehab) doctors, or physiatrists, for more in-depth assessment of musculoskeletal, neurologic, genetic, or iatrogenic conditions resulting in abnormal muscle tone and spasticity, such as cerebral palsy.

Audiology (see Services below for relevant providers)

Consult for infants with hearing impairments and for those who have failed hearing screens. In clinics with limited or no hearing screening available, refer the premature infant to an audiologist for routine testing.

Pediatric Ophthalmology (see Services below for relevant providers)

Premature infants with retinopathy of prematurity should be referred.

Physical Therapy (see Services below for relevant providers)

Refer for formal assessment and management of suspected motor skill delays. Physical therapists may be accessed through Early Intervention, school-based services, and in conjunction with rehab medicine - try to avoid unnecessary service duplications.

Speech/Language Therapy (see Services below for relevant providers)

Refer for assessment and help evaluating feeding and early language and communication development. SLPs often work with radiologists to perform swallowing evaluations.

Treatment & Management

How should common problems be managed differently in children with Premature Infant Follow-Up?

Growth Or Weight Gain

During the first few months, term infants typically gain 20-30 g/day, after which their gain gradually slows down. For premature infants with lower birth weights, continued post-discharge growth of at least 10 g/kg/d is more likely. [Lapillonne: 2013] Up to 85% of infants born SGA will “catch up” by age two, but such rapid growth is uncommon after 2-3 years of age. For those with short stature after two years of age, consider endocrinology referral for evaluation of growth and growth hormone treatment, which has been found to be efficacious and safe in children with a history of SGA. [Claas: 2011] [Houk: 2012] Children with Short Stature Born Small for Gestational Age provides additional information.

Pearls & Alerts

Overcoming challenges of connecting families with Neonatal Follow-Up Clinics

Connecting families with a neonatal clinic is sometimes challenging, or overlooked, as families may be in locale for short time while their child NICU. Making sure eligible families are connected with a neonatal follow-up clinics (different states a have different criteria because addresses may not be stable and route info

Systems

Development (general)

Children who are born prematurely, particularly those born extremely early, often experience developmental delays. For some children, these delays will resolve over time, however, others will have life-long disabilities. Early detection and intervention is the primary care provider's responsibility.

When a delay is recognized, further evaluation may be warranted (e.g., hearing testing for the child with speech/language delay or neurologic evaluation for abnormalities of movement, muscle tone, or limb asymmetry). In some situations, the child just needs time to “catch up.” Typical and Atypical Motor Development Videos (Pathways.org) has three 12-minute videos comparing typically developing and atypically developing children at 2 months, 4 months, and 6 months old. Developmental Milestones (pathways.org) lists milestones for 0-3 years.

Special Education Services may include:
  • Developmental Preschool: Developmental preschool is provided by the public school system for children over age 3 with developmental delays. Developmental preschool provides a structured learning environment with peer interaction and modeling by children who are “typically” developing. Therapies such as physical therapy, occupational therapy, and speech language therapy are provided within the school setting when needed. Parental support is provided to families as well. These programs are operated by the local school district.
  • Specialized Kindergarten: Available through the public school system to help kindergarten age children who need special services. These programs go by various names, such as “Diagnostic Kindergarten."
  • Elementary and Secondary Schools Resources: Resources for learning disabilities are usually established around 7 years of age, when I.Q. scores have become more reliable (barring extreme environmental challenges) and I.Q. subtests can distinguish learning strengths and weaknesses. Sometimes early indications of a learning disability can be seen at a Neonatal Follow-Up Clinic's 4½-year-old cognitive testing and the parents can be informed that they need to follow-up academic achievement testing and cognitive testing in the early elementary school years.

Subspecialist Collaborations & Other Resources

Early Intervention Programs (see Services below for relevant providers)

Refer premature children ages 0-35 months who are at risk for (or who are are demonstrating) developmental delays. Services may include visits by therapists (physical, occupational, speech, vision, etc.) and specific programming for a disability.

Head Start/Early Head Start (see Services below for relevant providers)

Refer children ages 0-5 from low-income families for this federally funded school readiness program. Head Start can accommodate delays that are not severe, such as speech articulation, or a need to develop play skills, decrease aggression, etc.

Preschool/Early Childhood Education (see Services below for relevant providers)

Contact the local school district for eligibility information and refer children with developmental delays who over the age of 3.

School Districts (see Services below for relevant providers)

Refer children ages 3 and up to their public school district for evaluation and services, including occupational, physical, and speech therapies, as needed for the child to participate in educational activities.

Occupational Therapy, Pediatric (see Services below for relevant providers)

Refer babies and children who have feeding or sensory difficulties, and motor delays that impact the child’s ability to participate in basic care activities. Refer older children to occupational therapists who specialize in hand function and activities of daily living.

Physical Therapy (see Services below for relevant providers)

Referral can be helpful for evaluating delays in gross motor function, improving mobility, and customizing devices that enhance mobility.

Psychologist, Child-18 (see Services below for relevant providers)

Referral can be useful for evaluation of delayed social skills.

Mental Health/Behavior

Infant and toddler behavioral problems, including ADHD, anxiety, and autism, are common among preterm infants and should be evaluated and treated in the same manner as for any other child. Some medical concerns are more common in children born prematurely and may cause or contribute to behavioral problems:
  • Inadequate sleep - Medications for Sleep and Sleep Problems provide further diagnosis and management information.
  • Constipation - Bowel Management provides further diagnosis and management information.
  • Seizures - Seizures/Epilepsy provides further diagnosis and management information.
  • Side effects of medications
  • Gastroesophageal reflux - Feeding and Gastrointestinal Issues of the Preterm Infant provides a section with further diagnosis and management information.
  • Skin conditions causing chronic irritation
  • Other sources of pain, such as chronic ear infections
  • Physical neglect or sexual or other physical abuse - the Portal's Foster Care module provides further diagnosis and management information for these toxic stress issues.
If primary care management of these issues and of the behavior problems proves unsuccessful, referral should be considered. The Medical Home Portal has diagnosis and management modules for Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder, and, a special topic page about Anxiety Disorders and Attention Deficit Hyperactivity Disorder (ADHD).

Subspecialist Collaborations & Other Resources

Early Intervention Programs (see Services below for relevant providers)

Some programs offer treatment for social problems (e.g., aggression or lack of social engagement, which can accur with autism) and classes for parents to improve their parenting skills.

Head Start/Early Head Start (see Services below for relevant providers)

Refer children ages 0-5 from low-income families for this federally funded school readiness program that can help with areas of non-severe delay such as speech articulation, developing play skills, or decreasing aggression. This is generally not a placement for children with autism.

School Districts (see Services below for relevant providers)

Refer children ages 3 and up with significant behavioral issues or social skills deficits to their public school district for evaluation and for school-based behavioral services. Although variable, publicly supported services may include counselors and psychologists, special education services, social skills groups, and specialized behavioral classrooms.

Behavioral Programs (see Services below for relevant providers)

Refer children who need assistance with specific behaviors, mood disorders, or problem-solving skills - behavioral programs for autism are offered in some areas.

Psychologist, Child-18 (see Services below for relevant providers)

Refer children who need private therapy for specific behaviors, mood disorders, or problem solving skills. For delayed social skills, evaluation may be useful. Access varies with family’s income and insurance.

Psychiatrist, Child-18 (see Services below for relevant providers)

Refer children with complex mental health issues, particularly if they require psychiatric medication management beyond the expertise of the primary care provider. Psychiatrists may be willing to help the medical home clinician manage medications without referral.

Communication

Graduates from the NICU are at high risk for communicative disorders such as:
  • Delayed early language development
  • Language and auditory processing deficits, generally diagnosed after 2 1/2 years of age
  • Difficulties with articulation or production of speech sounds
  • Motor speech disorders of apraxia and dysarthria
  • Voice problems due to vocal cord paralysis or velopharyngeal incompetence
Parents should be educated about speech and language milestones and guided in modeling and language stimulation activities. When appropriate, home programs to work on specific deficit skills can be developed. Occasionally, significant motor impairment necessitates the use of augmentative communication devices.

Subspecialist Collaborations & Other Resources

Early Intervention Programs (see Services below for relevant providers)

Refer infants or children under the age of 3 with a suspected diagnosis of speech or language delay for developmental assessment and relevant services.

Speech/Language Therapy (see Services below for relevant providers)

Refer children with speech disorders or language delays whose needs are not adequately met through Early Intervention and the public school system as part of Special Education services. Speech and language therapists may be accessed through referrals to private therapists or through community-based and not-for-profit programs.

School Districts (see Services below for relevant providers)

Refer children ages 3 and up with speech and language delays to their public school district for evaluation and services through Special Education. If a child has only a speech or language delay, it will need to be fairly severe to qualify for speech and language therapy in the schools. Private or community-based speech therapy is an option for children who do not qualify for school-based services,

Head Start/Early Head Start (see Services below for relevant providers)

Refer children ages 0-5 from low-income families for this federally funded school readiness program. Head Start can help with speech articulation when the delay is not severe enough to qualify the child for developmental services such as Early Intervention or Special Education.

Eyes/Vision

Preterm infants are at risk for many problems that affect vision including retinopathy of prematurity (ROP), strabismus, cortical visual impairment, and problems with visual acuity.

Each year in the U.S., 14,000-16,000 infants develop retinopathy of prematurity (ROP), characterized by abnormal retinal vascularization in preterm infants; of these infants, approximately 400-650 become legally blind (>20/200). Infants less than 32 weeks or below 1500 grams should be screened for ROP. [Section: 2006] Retinopathy of Prematurity provides further information.

Strabismus is improper alignment of the eyes and can lead to diminished visual acuity and depth perception.

Cortical visual impairment (CVI) is a decreased visual response due to a neurological problem affecting the visual part of the brain. With CVI, the eye exam is normal or the child “has an eye condition that cannot account for the abnormal visual behavior. [American: 2015] This condition used to be called cortical blindness, but this is misleading since vision can improve with time. Several conditions in the preterm infant place them at increased risk of complications, such as:
  • <1500 grams
  • <32 weeks
  • High grade IVH
  • Hydrocephalus
  • Severe illness (the need for ECMO)
  • Hypoxia
  • Infection, particularly CNS infection
  • PVL
  • Stroke
Many premature infants will receive their initial ophthalmologic exam in the NICU. Primary care providers can work with families to establish an ophthalmologic follow-up plan and to monitor for changes through routine vision screening and eye exams.

Subspecialist Collaborations & Other Resources

Pediatric Ophthalmology (see Services below for relevant providers)

Refer for expertise in evaluating and managing ophthalmologic complications of prematurity, especially retinopathy of prematurity and strabismus.

Schools for the Deaf & Blind (see Services below for relevant providers)

Refer children with significant vision and/or hearing sensory disorders.

Early Intervention Programs (see Services below for relevant providers)

Refer infants or children under the age of 3 with visual impairment.

Ears/Hearing

Premature infants are at increased risk of hearing impairment, including later-onset and progressive hearing loss and auditory neuropathy. Contributing factors that can increase risk include:
  • Extreme prematurity as well as prolonged oxygen use
  • Infants who have a history of in utero infections such as cytomegalovirus, rubella, syphilis, herpes, or toxoplasmosis
  • Infants who have received certain antibiotics, have received extracorporeal membrane oxygenation (ECMO), or who have suffered other neurological complications
Infants should receive their first audiology screening prior to discharge from the NICU. Ensure follow-up for those children having abnormal screens. If hearing loss is identified, first steps in assisting the child and family include:
  • Educating the family regarding the need for:
    • speech and language therapy
    • hearing amplification to overcome hearing loss
    • evaluation by an otorhinolaryngologist (ENT)
    • early intervention services
  • Providing information about communication options and hearing technologies
  • Evaluating for associated medical conditions, such as heart arrhythmias, vision problems, and kidney problems
The Portal's module on Hearing Loss and Deafness provides further diagnosis and management information.

Subspecialist Collaborations & Other Resources

Audiology (see Services below for relevant providers)

Refer for testing and evaluation of hearing at all ages; assistance in selecting, fitting, and counseling related to the use of augmentative hearing devices; and for mapping for cochlear implants..

Schools for the Deaf & Blind (see Services below for relevant providers)

Refer children with significant vision and/or hearing sensory disorders to services offered.

Nutrition/Growth/Bone

Premature infants’ nutritional needs and feedings are not the same as for full-term infants, and often require concerted effort to manage them effectively in the medical home. Feeding difficulties or gastrointestinal complications can affect the preterm infant’s nutrition. Despite the NICU feeding summary, unanticipated changes may occur after discharge, or the infant may no longer tolerate the schedule or the formula used in the NICU. Therefore, monitoring the infant’s growth rates, feeding volumes and skills, and adjusting nutrition are important roles of the medical home team. Specialists in lactation, nutrition, or gastroenterology can be helpful resources. Preterm infants have increased demands for protein, calcium, and energy. For information about energy/protein/vitamin needs of the premature infant, human milk fortifier use, and specialized preterm formulas components, see the Portal’s issue page on Nutritional Needs of the Preterm Infant.

If infants experience complications that interfere with adequate nutrition, osteopenia may result and fractures could occur. Preterm infants are at risk for the development of oromotor dysfunction and oral aversion, as well as gastroesophageal reflux and dysmotility, all of which can negatively affect feeding. For more information, see the Portal’s issue page on Feeding and Gastrointestinal Issues of the Preterm Infant.

Subspecialist Collaborations & Other Resources

Nutrition/Dietary (see Services below for relevant providers)

Consultation can be helpful to determine nutritional needs and special dietary requirements for more complicated patients.

Gastro-Intestinal & Bowel Function

Issues such as abdominal wall defects, obstructions, necrotizing enterocolitis, and anorectal anomalies are typically addressed and resolved prior to NICU discharge; however, infants who have undergone abdominal surgery may be at risk for adhesions and are at risk for gastrointestinal issues such as:

Gastrointestinal Dysmotility: By the time the infant is in the primary care setting, the risk of necrotizing enterocolitis has passed. However, the child who has a history of necrotizing enterocolitis may, depending on the amount of gastrointestinal tract resected, have problems with motility (either constipation or diarrhea) and may be at risk for postsurgical complications such as strictures that can cause vomiting and dehydration that would require urgent medical/surgical intervention. The Portal's issue page on Feeding and Gastrointestinal Issues of the Preterm Infant provides management information for gastrointestinal dysmotility.

Gastroesophageal Reflux (GER):
Premature infants may have severe difficulties with GER due to the immaturity of, and insult to, the gastrointestinal tract. In most babies, GER is a benign occurrence that does not cause pain or impair feeding or growth. It peaks around 4 months of age and gradually diminishes over the first year. Sometimes, though, it can cause pain and poor growth. Common symptoms include feeding refusal, recurrent vomiting, poor weight gain, irritability, sleep disturbances, and respiratory symptoms such as coughing, wheezing, or recurrent pneumonia. GER is usually managed with avoidance of overfeeding, positioning, removal of dairy from the diet, thickening of breast milk or formula, or medications. [Lightdale: 2013] The Portal's page on Feeding and Gastrointestinal Issues of the Preterm Infant provides the details of these treatments.

Feeding Tubes: Motility problems, feeding difficulties, reflux, and/or aspiration may contribute to the need for gastric or jejunal feeding tubes. If such a device is in use, it is important for the family and primary care provider to understand how the device works and know how to access information about the device should it stop working or need to be replaced. The primary care clinician should review this care plan with the family. See the Portal's page on Feeding Tubes and Gastrostomies and Feeding Tube Issues for further information.

Cholestasis: For those preterm infants with cholestasis (decreased bile flow), either from total parenteral nutrition (TPN) in the NICU or from other underlying medical causes, it is important to monitor laboratory values such as liver function tests and to closely monitor the infant’s growth. Cholestasis can result in pruritus (itching), steatorrhea (fatty stools), and growth difficulties; additional caloric supplementation may be required. Medium-chain triglyceride oil, additional protein, and fat-soluble vitamins may be needed; supportive medications such as ursodiol may need to be weaned off as an outpatient. [Suchy: 2004]

Umbilical Hernias: Umbilical hernias, caused by incomplete closure of the abdominal muscles around the site where the umbilical cord was present in utero, occur more frequently in premature infants. When a loop of intestine protrudes into this area, it can stick out. Crying and bearing down can make these hernias more noticeable. If the hernia remains reducible, surgery may not be required. Typically, umbilical hernias self-resolve over the first few years of life. [KidsMD: 2014]

Subspecialist Collaborations & Other Resources

Pediatric Gastroenterology (see Services below for relevant providers)

Refer for evaluation and the collaborative management of necrotizing enterocolitis, short bowel syndrome, or congenital gastrointestinal abnormalities with perforation or failure to thrive.

Early Intervention Programs (see Services below for relevant providers)

Refer for developmental delays affecting the infant’s ability to take oral nutrition.

Occupational Therapy, Pediatric (see Services below for relevant providers)

Refer for feeding therapy. The training backgrounds of feeding therapists vary, and may include occupational therapists, speech language pathologists, or developmental therapists; additional training in feeding therapy is optimal.

Pediatric Otolaryngology (see Services below for relevant providers)

Consult with ENT to evaluate and manage airway issues that impair swallowing and feeding, such as symptomatic laryngomalacia that may need surgical intervention.

Respiratory

Bronchopulmonary Dysplasia (BPD): Extremely low birth weight infants at a corrected-gestational age of 36 weeks have rates of 43% and 24% of moderate and severe BPD, respectively. [Geary: 2008] A diagnosis of BPD is made by assessment of the infant’s oxygen requirements. An infant <32 weeks is assessed at 36 weeks or at discharge (whichever occurs first). An infant ≥ 32 weeks gestation is diagnosed between 28-56 days of life or if discharged home first. In both instances a diagnosis requires at least 28 days of treatment with oxygen >21% FIO2. At the assessment, infants are stratified into mild, moderate, and severe based on their current oxygen requirement. [Martin: 2006]

In general, BPD results from:
  • Injury and inflammation of airway and alveolar septal fibrosis, typically from oxygen toxicity, barotraumas, or infection (old BPD)
  • Delayed lung development, resulting in decreased septation, alveolar hypoplasia (fewer and larger alveoli), and abnormal pulmonary vessels (new or atypical BPD)
Management of BPD in the outpatient setting focuses on:
  • Promoting growth - Infants with BPD may be discharged on increased caloric intake and/or fluid restriction. Diuretic use has not improved long-term outcomes of infants with BPD. [Stewart: 2011] See Nutrition/Growth/Bone management section, above.
  • Preventing constipation - Constipation Treatment
  • Managing gastroesophageal reflux - Gastroesophageal Reflux
  • Preventing illness and following immunization recommendations - In addition to routine vaccines, infants and children with BPD should be considered for immunization with palivizumab (Synagis) and 23-valent pneumococcal (Pneumovax 23 or PPSV23). [Pickering: 2012] See also RSV Prophylaxis and High-Risk Groups (CDC), Pneumococcal Disease (CDC), and Immunization Schedules (CDC) provide further details.
  • Managing home oxygen therapy - Use clinical indicators as well as pulse oximetry to wean infants from prolonged oxygen supplementation unless oxygen is indicated for another reason (such as pulmonary hypertension). Weaning from oxygen should be gradual, and attempted only after the infant is stable and demonstrates optimal weight gain. The Portal's page on CPAP and Bilevel PAP.
Although with growth, the pulmonary function tends to normalize, children with a history of BPD (especially severe BPD) are at increased risk of psychomotor and mental development delay, cerebral palsy, blindness, hearing impairment, pulmonary hypertension, sleep hypoxemia, central upper airway disease, asthma-like symptoms, impaired pulmonary function, and respiratory infections. [Martin: 2006] These findings are based primarily on old BPD outcomes – outcomes of atypical or “new” BPD are not yet well studied. (The nature of bronchopulmonary dysplasia, also known as neonatal chronic lung disease, has changed, particularly with the use of surfactant and ventilation management.) Affected infants and children may benefit from inhaled bronchodilators corticosteroids, similar to asthma management.

Apnea of Prematurity: Preterm infants display a variety of distinctive breathing patterns. Like most newborns, these infants can vary between normal breathing, periodic breathing (harmless, recurring sequences of several seconds of paused breathing followed by slightly longer interval of rapid breathing), and more worrisome hypoventilatory and apneic episodes. Apnea is defined as no breathing for at least 20 seconds, and may include color changes such as pallor or cyanosis as well as bradycardia (slowing of the heart rate). The infant may appear to be swallowing during these times. Episodes often are mixed central and obstructive apnea. Infections and metabolic conditions can worsen apnea. Infants typically must demonstrate several days of no apnea off xanthine therapy (i.e. caffeine) before leaving the NICU. If monitoring is continued after discharge, it usually may be safely discontinued by 43-44 weeks post-conception age. This apnea of prematurity resolves before the peak incidence of Sudden Infant Death Syndrome (SIDS) and is not known to directly increase the risk of SIDS. However, premature infants are at 3-4 times increased risk of SIDS than term infants. Peak incidence of SIDS extreme preterm infants (e.g. less than 25 weeks) starts at 40 weeks postconception age, and at 44 weeks postconception age for term infants - both last for 3-4 month. [Martin: 2006]

Vocal Cord Paralysis: Paralysis of the vocal cords may be unilateral or bilateral, and can be secondary to anatomical problems or due to trauma during surgery or intubation procedures. In unilateral vocal cord paralysis, a weak cry is often noted as well as stridor when stressed. Unilateral paralysis often resolves within the first year. Bilateral paralysis has more severe symptoms and may require tracheostomy. When caring for infants with vocal cord paralysis, the clinician must be vigilant for aspiration. [Martin: 2006]

Laryngomalacia: Relatively common, this congenitally flaccid larynx can result in stridor, a coarse inspiratory noise that may develop typically within a month after birth. The intermittent airway obstruction is worse with agitation and crying, and tends to progress during the first 8-12 months then resolve by age 2. Positioning and calming are conservative management tools; very severe cases may require corrective surgery or tracheostomy. Control of gastroesophageal reflux is also valuable. [Martin: 2006]

Tracheomalacia: Tracheomalacia occurs when there is weakness of the cartilages that support the trachea, either related to incomplete development or to trauma from prolonged intubation, GERD, or abnormal surrounding structures. Tracheomalacia may arise during the first year of life, and is associated with abnormal breathing such as wheezing or stridor, dyspnea or apnea, or recurrent respiratory infections. An ENT can diagnose tracheomalacia with endoscopy. Interventions may include supportive care, treatment of reflux, BiPAP, and/or surgery. Most cases of tracheomalacia resolve spontaneously by age 2. [Graham: 2007]

Aspiration: Aspiration (paradoxical movement of feeds, refluxed gastric contents, or saliva into the airway and lungs) occurs more frequently in preterm infants. History may include choking, gagging, coughing, or brief cyanotic spells typically associated with feeds (including with gavage feeds). Aspiration should be considered in an infant with recurring pneumonitis or pneumonia. A swallow study typically consists of radiologic assessment of the swallow, such as a modified barium swallow study, as well as an evaluation by a feeding therapist (often a speech therapist). This swallow study provides the family, the primary care provider, and the outpatient feeding therapist with information on how to safely feed the infant, and may be repeated as needed to assess for changes. For infants with aspiration, suggested adaptations to routine feeding may range from thickened consistencies of liquids to tube feedings.

Subspecialist Collaborations & Other Resources

Pediatric Pulmonology (see Services below for relevant providers)

Consult for evaluation and management of persistent pulmonary complications, such as BPD, pulmonary hypertension, prolonged supplemental oxygen need, or reactive airways/asthma.

Pediatric Otolaryngology (see Services below for relevant providers)

Refer for evaluation and management of airway complications such as anomalies, laryngo- or tracheomalacia, vocal cord paralysis, stridor and noisy breathing, tracheostomy, or other obstructive breathing concerns.

Occupational Therapy, Pediatric (see Services below for relevant providers)

Refer for assistance with evaluation and management of infants with suspected or known aspiration. The training backgrounds of feeding therapists vary, and may include occupational therapists, speech language pathologists, or developmental therapists; additional training in feeding therapy is optimal.

Respiratory Therapy (see Services below for relevant providers)

Consult to help guide management of more complex respiratory support needs such as tracheostomies and home ventilation.

Cardiology

Patent Ductus Arteriosus (PDA): The ductus arteriosus, an essential structure for fetal circulation, typically closes spontaneously after birth within the first day of life. PDA in full-term infants usually is followed up clinically with monitoring until spontaneous closure occurs; however, surgery may be recommended if not closed by 6 months of age. [Martin: 2006] PDA occurs more frequently in premature and small babies; 30% of infants weighing < 1.5 kg at birth have a PDA. [Martin: 2006] While spontaneous closure may occur in preterm infants, a PDA resulting in congestive heart failure and respiratory distress may require therapy to close the ductus. There are both medical and surgical options including ductal ligation, and these are typically managed in the hospital setting.

Ventricular Septal Defect (VSD): Infants with VSD (a persistent opening between the right and left ventricles of the heart) often are asymptomatic and spontaneous closure frequently occurs. The murmur may be appreciated clinically as a holo- or pansystolic murmur; however, large defects may not create an audible murmur. Electrocardiogram and chest radiograph can be reassuring, but echocardiogram is diagnostic. Large defects that do not spontaneously close can lead to congestive heart failure and other complications. Consultation with a pediatric cardiologist is helpful for family reassurance and to manage symptomatic defects.

Atrial Septal Defect (ASD): Typically an incidental finding and may resolve in first year.

Hypertension: Preterm infants are at increased risk of hypertension. Approximately 2% of NICU graduates have hypertension, defined as >95th percentil for the infant’s size, gestational age, and postnatal age [Nickavar: 2014], often from renovascular issues.This risk increases if the infant has undergone umbilical artery catheterization, has received extracorporeal membrane oxygenation (ECMO), or has comorbid conditions such as renal, endocrine, cardiac, or pulmonary problems including bronchopulmonary dysplasia (BPD), or has a history of intraventricular hemorrhage (IVH). Up to 9% of infants with a history of umbilical artery catherization may develop hypertension, underlining the importance of blood pressure monitoring in the outpatient setting particularly for preterm infants. [Flynn: 2013] Some infants with hypertension will require fluid restriction, dietary changes, or medications. Management in consultation with a pediatric nephrologist and/or cardiovascular specialist may be required. Use blood pressure charts with age-appropriate norms; daily home blood pressure monitoring can also help with monitoring babies discharged on antihypertensive medication. [Flynn: 2013] Prognosis is usually good. Persistent Pulmonary Hypertension of the Newborn (PPHN): When pulmonary vessels do not relax sufficiently to effectively adapt to the extrauterine environment, the high pulmonary vascular resistance can lead to pulmonary and right ventricular hypertension. In response, the heart may shunt blood across the ductus arteriosus and the foramen ovale, and may lead to hypoxemia. Treatments are focused on improving any underlying lung disease as well as reducing or eliminating the pulmonary hypertension. Interventions may include oxygen, surfactant, mechanical ventilation, inhaled nitric oxide, ECMO, correction of metabolic abnormalities, thermoregulation, and medications including vasodilators to help with cardiac output. This condition tends to happen more frequently in near-term or term infants. These infants are at increased risk of adverse neurodevelopmental outcomes and sensorineural hearing loss, conditions that should be monitored for in the outpatient setting. [Salaam: 2014]

Thromboembolism: Premature infants often undergo invasive catheterization at birth or during the NICU stay. Invasive catheterization of arteries and veins increases the risk of thromboembolism such as in the aorta or renal blood vessels. When the renal vessels are affected, the infant may develop hypertension, impaired urine excretion and kidney function, congestive heart failure, and impaired blood flow to the lower extremities. Babies may require intervention for thrombolysis and medications to control blood pressure. Thrombosed kidneys may atrophy over time, leading to sustained renal insufficiency and hypertension. Ongoing management may include monitoring blood pressure and kidney function with serum creatinine clearance and urine studies, and ultrasonography.

Subspecialist Collaborations & Other Resources

Pediatric Cardiology (see Services below for relevant providers)

Consult for assistance in diagnosing and managing persistent cardiovascular problems such as pulmonary hypertension or persistent ductal or septal defects, as well as determining timing of surgery.

Pediatric Cardiothoracic Surgery (see Services below for relevant providers)

Refer for surgical interventions for severe or persistent cardiovascular problems such as congenital heart disease and defects, pulmonary hypertension, or persistent ductal or septal defects.

Neurology

Infants born preterm are at an increased risk for neurological damage, which can lead to cerebral palsy, including tone abnormalities, motor delays, and other neurodevelopmental problems. At particular risk are those infants with a history of intraventricular hemorrhage (IVH), neonatal seizure(s), neonatal stroke, periventricular leukomalacia (PVL), cerebellar injury, and porencephaly. Infants with brain injury either from before or during birth, or subsequent to complications of their neonatal care, may also develop seizures.

Cerebral palsy (CP): CP occurs in approximately 12-15% of extremely premature infants. Although the injury is not progressive, it may take time, serial examinations for developmental delays, and recognition of abnormal patterns of movement to recognize CP. Abnormal tone, imbalance, or asymmetric development of early motor skills may be indicators, and many children affected with CP have intellectual disability or other developmental delays, seizures, or hydrocephalus. A number of rehabilitative services are available to help children with CP and their families. Please see the Cerebral Palsy module for evaluation, management, and services information.

Seizures: Seizures may occur at any age. Neonatal seizures are those with onset between 0-2 months. Infantile spasms are a severe type of early seizure and are most often related to perinatal asphyxia, prenatal infections, or other conditions such as tuberous sclerosis or metabolic disorders. Some seizures types do not require antiepileptic medication, but do require special precautions during bathing and other activities. The Portal modules Seizures/Epilepsy and Infantile Spasms contain diagnosis and management details.

Subspecialist Collaborations & Other Resources

Pediatric Neurology (see Services below for relevant providers)

Consult for assistance with initial diagnosis of cerebral palsy, evaluation of unusual or atypical tone and movement patterns, and management of seizures.

Pediatric Neurosurgery (see Services below for relevant providers)

Refer for shunt management and ongoing evaluation of hydrocephalus as well as evaluation of atypical head shape.

Pediatric Genetics (see Services below for relevant providers)

Offer a consultation with geneticist or genetic counselor when there is concern of a genetic abnormality that may be contributing to the infant’s preterm condition and/or complications.

Genito-Urinary

Nephrocalcinosis/Kidney Stones: Calcium deposits in the renal interstitium are known as nephrocalcinosis, and occur in many premature infants. There is increased risk for infants who receive loop diuretics, such as for chronic heart or lung disease, which can cause hypercalciuria. While typically these kidney stones resolve within the first few months after discontinuing diuretics, there is concern that persistent stones may inhibit kidney development and impair function. Ultrasonography is useful for identifying stones, and measurement of spot urine calcium and creatinine ratio can help to monitor for adequate excretion.

Hydrocele: Premature and low birth-weight infants are at risk of developing unilateral or bilateral hydroceles, or excess fluid in the scrotum due to incomplete closure of the processus vaginalis. These typically transilluminate and often resolve spontaneously, but some will require surgery to close. [ClinicalKey: 2014] Refer communicating hydroceles upon discovery to prevent incarceration; refer other hydroceles if problematic and not resolved by 1 year. [McInerny: 2008]

Inguinal Hernias: Inguinal hernias occur in 11% of infants born under 1500 grams and are more commonly found on the right side and in male infants. [Kumar: 2002] During fetal development, testicles pass from the abdomen into the scrotum through the inguinal canal. If there is incomplete closure of this canal after birth, an inguinal hernia may occur. This can allow a loop of intestine to sag through the inguinal canal and into the scrotum, which presents risks for strangulated bowel. Since girls have inguinal canals, they are also at some risk for hernias. Refer inguinal hernias for surgical repair. [McInerny: 2008]

Undescended Testes: In premature males, undescended testes are common. If not self-resolving in the first 6 months, or if worsening, then a surgical referral should be made.

Circumcision: Male infants born prematurely may not be offered a circumcision procedure while in the NICU. Information can be provided to interested families about safely obtaining circumcision based on the age, size, and health of their child. Some families may elect to have a circumcision performed if the child is undergoing sedation for another procedure.

Subspecialist Collaborations & Other Resources

Pediatric Urology (see Services below for relevant providers)

Refer for evaluation and surgical management of persistent urologic problems such as urinary reflux, posterior urethral valves and hydronephrosis, inguinal hernias, or persistent hydroceles.

Pediatric Nephrology (see Services below for relevant providers)

Consultation is helpful in evaluating and managing kidney and urinary tract issues such as nephrocalcinosis, hypertension, reflux, and abnormal kidney function.

Musculoskeletal

Head shape
Head deformation occurs in just under 1 out of 5 of term infants, and in infants born prematurely that rate is higher. [Rogers: 2011] Plagiocephaly, or asymmetric flattening of the posterior skull, is common due to lying in a supine position. Dolichocephaly (narrow biparietal or side-to-side measurement with an elongated skull) is now less common with developmental care in the NICU. Often, head shape variation is a cosmetic issue and requires no treatment. However, there are circumstances in which further evaluation should be undertaken and treatment with a helmet is considered. [Rogers: 2011] Craniosynostosis, or early closure of one or more cranial sutures, can look similar to some types of deformational abnormalities. For more details about management, see the Portal's Evaluating and Managing Head Shape issue page.

Hips, extremities, and spine
Formation of the bones and muscles is generally unaffected by premature birth. As with term infants, parents may need reassurance about the relative bow-legged appearance of their infant. Hip exams should be performed at routine intervals for the first 1-2 years, and those with suspected hip dysplasia or abnormal hip exams should be referred for imaging and specialist consultation. When performing screening imaging for hip dysplasia based on risk factors such as breech positioning or sibling with hip dysplasia, imaging should be completed at intervals adjusted for prematurity. For children with cerebral palsy or congenital malformations, the medical home provider should work with a team of specialists to evaluate and manage the condition.

Subspecialist Collaborations & Other Resources

Pediatric Orthopedics (see Services below for relevant providers)

Refer for help managing congenital malformations, suspected hip or spine problems, and for routine care and management of children with cerebral palsy.

Physical Therapy (see Services below for relevant providers)

Refer for help managing persistent torticollis and to prevent associated cranial deformity.

Pediatric Plastic Surgery (see Services below for relevant providers)

Refer to a plastic surgeon, neurosurgeon, or craniofacial specialist to evaluate and manage cranial deformities.

Pediatric Neurosurgery (see Services below for relevant providers)

Refer to a neurosurgeon, plastic surgeon, or craniofacial specialist to evaluate and manage cranial deformities.

Dental

Because infants born preterm are at increased risk for enamel hypoplasia and dental defects, good dental hygiene and dental health-promoting practices within a pediatric dental home are especially important. Infants who are born prematurely should see a dentist by 1 year of age or after eruption of the first tooth. [Schaaf: 2011] A narrow palate is common and can cause difficulties moving food in the mouth and contribute to short-term feeding difficulties. It is presumed to be a result of orotracheal intubation. [Hohoff: 2005] [Paulsson: 2004] Teething may occur following corrected gestational age, but the age ranges vary. It is not known what the long-term consequences of prematurity are on the palate or its morphology and the need for treatment such as orthodontia.

Subspecialist Collaborations & Other Resources

Pediatric Dentistry (see Services below for relevant providers)

Referral is helpful for infants and children with abnormal dentition or sensory issues affecting their ability to cooperate with dental care and examinations.

Skin & Appearance

Remind families to protect scars with sunblock during periods of sun exposure.

Frequently Asked Questions

How long do you keep babies on premature formulas or fortified breast milk?

A general rule is to keep the infant on premature formula or fortified breast milk until their due date, but unanticipated changes may occur after discharge, or the infant may no longer tolerate the schedule or the formula used in the NICU. Therefore, frequent monitoring of the infant’s growth rates, feeding volumes and skills, and adjusting nutrition accordingly, are important roles of the medical home team. Specialists in lactation, nutrition, or gastroenterology can be helpful resources in determining duration of formulas or fortifies breast milk.

What about iron supplements?

There is a lack of consensus about iron supplementation. Consideration must be given to use of iron-containing formulas, fortifiers, multivitamins with added iron, and foods as well as the history of erythrocyte transfusions, as premature infants may also develop iron overload. Recommended Iron supplementation on the lower end for routine care of late preterm infants is 2-4 mg/kg/day. Start around 4 weeks of life and continue until approximately 12 months of age, or when child can ingest adequate iron from food or formula. Common formulations for babies contain 15 mg of elemental iron per 1 mL of liquid. Iron supplementation can cause gastric upset and hard or darkened stools. Lab monitoring can determine if iron supplements continue to be indicated, especially if the infant is suspected of having GI side effects from added iron.

Should you recheck hearing for a baby who spent time in the NICU and if so, when?

Hearing screening is typically performed prior to discharge in the NICU, but diagnostic audiology testing is recommended by 24-30 months for all infants who stayed in the NICU 5 days or more, or who have other risk factors or parental concerns. See the Portal's page on Hearing Testing for more details.

Why screen babies for ROP?

Screening decreases the risk of blindness from ROP by about 50% with timely laser treatment. Screening exams and photographs are aimed at detecting the disease when it is just bad enough to warrant treatment.

When should you refer a formerly premature infant who does not catch up with linear growth?

For those with short stature after two years of age, consider endocrinology referral for evaluation of growth and growth hormone treatment, which has been found to be efficacious and safe in children with a history of SGA. Children with Short Stature Born Small for Gestational Age provides additional information.

Issues Related to Premature Infant Follow-Up

Gastro-Intestinal & Bowel Function

Bowel Management

Resources

Information for Clinicians

CPAP and Bilevel PAP (MHP)
Provides information about indications for use, alternatives, equipment, and management; Medical Home Portal.

Follow-up of the NICU Patient
Includes information about areas of assessment, long-term monitoring, testing, and outcomes.

Hearing Testing (MHP)
Provides information about hearing and language development and testing methods; Medical Home Portal.

Neonatal Hypertension (Medscape)
Provides presentation , diagnosis, and treatment information.

Feeding Tubes and Gastrostomies (MHP)
Provides information about non-surgical and surgical feeding tubes; Medical Home Portal.

Helpful Articles

Berger SP, Holt-Turner I, Cupoli JM, Mass M, Hageman JR.
Caring for the graduate from the neonatal intensive care unit. At home, in the office, and in the community.
Pediatr Clin North Am. 1998;45(3):701-12. PubMed abstract
Reviews basic concepts such as providing developmentally supportive care for the premature infant in respect to the immature central nervous system, understanding the functions and systems of community based early intervention services, and the medical management of NICU graduates living at home who are technology-dependent.

Ritchie SK.
Primary care of the premature infant discharged from the neonatal intensive care unit.
MCN Am J Matern Child Nurs. 2002;27(2):76-85. PubMed abstract
Covers the basic principles of growth, nutrition and feeding, development, and complications common to premature infants. Additionally, the NICU to home transition is addressed as well as the unique early behaviors and cues common to the preterm infant.

TeKolste T, Bragg J, Wendel S.
Extremely Low Birth Weight NICU Graduate.
2004; Washington State Department of Health, Children with Special Health Care Needs Program; http://www.medicalhome.org/4Download/cec/elbw.pdf
Supplement to: Low Birth Weight Neonatal Intensive Care Graduate. Specifically addresses post-NICU care of ELBW infants who: 1) experienced the usual complications associated with extreme prematurity and/or extreme low birth weight, and 2) were discharged home in a relatively healthy condition.

University of Washington and Mary Bridge Hospital and Health Center .
Low Birth Weight Neonatal Intensive Care Unit Graduate .
Washington State Consensus Project. Sept. 1998 / Updated 2005. / http://www.medicalhome.org/4Download/cec/CEC.pdf
Education and support for health care providers, parents, third-party payers, and policy makers interested in care of low birth weight infants and children.

Clinical Tools

Assessment Tools/Scales

Edinburgh Postnatal Depression Scale (English)
A free, 10-question screening tool for maternal depression to be used by primary care providers; British Journal of Psychiatry.

Edinburgh Postnatal Depression Scale (Spanish) (PDF Document 54 KB)
A free, 10-question screening tool, in Spanish, for maternal depression to be used by primary care providers; British Journal of Psychiatry.

Patient Health Questionnaire 2 (PHQ-2) (PDF Document 13 KB)
This is a 2-question version of the PHQ-9 using the first two questions of that tool.

Patient Health Questionnaire-9 (PHQ-9) (PDF Document 40 KB)
Nine-question depression screen with scoring information that can be used with adolescents 13-17 years old. Questions are based on DSM-IV diagnostic criteria for major depressive disorder; developed with a grant from Pfizer Inc, no fee required.

Screening for Developmental Hip Dysplasia—Clinical Algorithm (AAP)
Algorithm with screening recommendations and recommended actions; American Academy of Pediatrics.

Growth/BMI Charts

Growth Charts - 22 Weeks - 92 Weeks Postconceptional Age
Evaluates the growth adequacy during the first year of life in preterm infants according to sex (based on intrauterine growth measurements). Charts are from a "Supplement: Nutritional Recommendations for the Late-Preterm Infant and the Preterm Infant after Hospital Discharge;" Journal of Pediatrics - subscription required for access.

Daily Body Weight Versus Postnatal Age in Days (AAP)
Average daily body weight versus postnatal age in days for infants stratified by 100-g birth weight intervals; American Academy of Pediatrics - subscription required for access.

Weekly Length Versus Postnatal Age in Weeks (AAP)
Average weekly length versus postnatal age in weeks for infants stratified by 100-g birth weight intervals; American Academy of Pediatrics - subscription required for access.

Weekly Head Circumference Versus Postnatal Age in Weeks (AAP)
Average weekly head circumference versus postnatal age in weeks for infants stratified by 100-g birth weight intervals; American Academy of Pediatrics - subscription required for access.

Patient Education & Instructions

Tips for Encouraging Speech and Language Development (Pathways.org) (PDF Document 466 KB)
Two-page brochure with speech and hearing milestones and tips for assisting with their development.

Other

Training Module for CDC Growth Charts for Children with Special Health Care Needs (MCHB)
Hour-long, on-line module that teaches how the CDC Growth Charts can be used with children who have special health care needs; Maternal and Child Health Bureau.

Frequently Asked Questions About the 2000 CDC Growth Charts (CDC)
Answers to 8 questions about CDC growth charts and their use with special populations; Centers for Disease Control and Prevention.

Demonstrations: Heart Sounds & Murmurs (University of Washington)
Audio files of 16 different heart sounds and murmurs.

Immunization of Preterm and Low Birth Weight Infants (AAP) (PDF Document 256 KB)
Guidance for immunizing preterm and low birth weight infants; American Academy of Pediatrics.

Typical and Atypical Motor Development Videos (Pathways.org)
Three, 12-minute videos that compare typically developing with atypically developing children at 2 months, 4 months, and 6 months old; supported by American Academy of Pediatrics.

Learn the Signs. Act Early. Autism (CDC)
Includes fact sheets, growth charts, and waiting room and exam posters, as part of the campaign for early identification and diagnosis of autism and other developmental disabilities; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.

Information & Support for Families

Family Diagnosis Page

Information on the Web

For Parents and Families (MHP)
Includes many topics related to improving care for your child and to becoming a more effective partner in your child's care; Medical Home Portal.

Taking Your Preemie Home (KidsHealth)
Information to help parents transition from NICU to home care.

Supporting You and Your Preemie/Reaching Milestones (AAP) (PDF Document 824 KB)
Helps parents of preemies to understand important milestones to watch for at each age; American Academy of Pediatrics, March of Dimes, and National Association of Neonatal Nurses.

Care Notebook (MHP)
The care notebook helps keep track of appointments, resources, labs, medications, tests, care providers, and more. Download the complete notebook, compile in your own binder, or download separate forms; Medical Home Portal.

Financing Your Child's Healthcare (MHP)
Information, services, and resources that may help offset some of the medical costs of caring for your child with special health care needs; Medical Home Portal.

Support National & Local

Utah Parent Center
A non-profit organization that provides training, information, referral, and assistance to parents of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.

Center for Parent Information and Resources Locator
Parent Centers are for families with a child who has a disability, as well as the professionals who work with them.

Family Support for Children Who are Deaf or Hard of Hearing (NCHAM)
Extensive compilation of resources and sources of support for families that have a child who is deaf or hard of hearing; National Center for Hearing Assessment and Management.

Services for Patients & Families

The following lists resources that may be particularly helpful for finding services related to premature infant follow up:

Audiology

See all Audiology services providers (69) in our database.

Behavioral Programs

See all Behavioral Programs services providers (31) in our database.

Developmental Evaluation

See all Developmental Evaluation services providers (55) in our database.

Developmental Pediatrics

See all Developmental Pediatrics services providers (5) in our database.

Early Intervention Programs

See all Early Intervention Programs services providers (52) in our database.

Family Support, General

See all Family Support, General services providers (54) in our database.

Head Start/Early Head Start

See all Head Start/Early Head Start services providers (57) in our database.

Neonatal Follow-up Programs

See all Neonatal Follow-up Programs services providers (3) in our database.

Nutrition/Dietary

See all Nutrition/Dietary services providers (53) in our database.

Occupational Therapy, Pediatric

See all Occupational Therapy, Pediatric services providers (42) in our database.

Pediatric Cardiology

See all Pediatric Cardiology services providers (3) in our database.

Pediatric Cardiothoracic Surgery

See all Pediatric Cardiothoracic Surgery services providers (1) in our database.

Pediatric Dentistry

See all Pediatric Dentistry services providers (57) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (3) in our database.

Pediatric Genetics

See all Pediatric Genetics services providers (5) in our database.

Pediatric Nephrology

See all Pediatric Nephrology services providers (1) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (10) in our database.

Pediatric Neurosurgery

See all Pediatric Neurosurgery services providers (1) in our database.

Pediatric Ophthalmology

See all Pediatric Ophthalmology services providers (8) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (18) in our database.

Pediatric Otolaryngology

See all Pediatric Otolaryngology services providers (9) in our database.

Pediatric Physical Medicine & Rehab

See all Pediatric Physical Medicine & Rehab services providers (8) in our database.

Pediatric Plastic Surgery

See all Pediatric Plastic Surgery services providers (3) in our database.

Pediatric Pulmonology

See all Pediatric Pulmonology services providers (4) in our database.

Pediatric Urology

See all Pediatric Urology services providers (2) in our database.

Physical Therapy

See all Physical Therapy services providers (62) in our database.

Pregnancy-related, Other

See all Pregnancy-related, Other services providers (118) in our database.

Preschool/Early Childhood Education

See all Preschool/Early Childhood Education services providers (80) in our database.

Psychiatrist, Child-18

See all Psychiatrist, Child-18 services providers (28) in our database.

Psychologist, Child-18

See all Psychologist, Child-18 services providers (151) in our database.

Respiratory Therapy

See all Respiratory Therapy services providers (8) in our database.

School Districts

See all School Districts services providers (46) in our database.

Schools for the Deaf & Blind

See all Schools for the Deaf & Blind services providers (12) in our database.

Speech/Language Therapy

See all Speech/Language Therapy services providers (80) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Reviewing Author: Mary Ann Nelin, MD - 7/2015
Content Last Updated: 10/2015

Bibliography

American Association for Pediatric Ophthalmology and Strabismus.
Cortical Visual Impairment.
(2015) http://www.aapos.org/terms/conditions/40. Accessed on May 19, 2015.

Berger SP, Holt-Turner I, Cupoli JM, Mass M, Hageman JR.
Caring for the graduate from the neonatal intensive care unit. At home, in the office, and in the community.
Pediatr Clin North Am. 1998;45(3):701-12. PubMed abstract
Reviews basic concepts such as providing developmentally supportive care for the premature infant in respect to the immature central nervous system, understanding the functions and systems of community based early intervention services, and the medical management of NICU graduates living at home who are technology-dependent.

Claas M.J., de vries LS, Koopman C, Uniken Venema MM, Eijsermans MJ, Bruinse HW, Verrin Stuart AA.
Postnatal growth of preterm born children ≤750g at birth.
Early Human Development. 2011;87(7):495-507. PubMed abstract

ClinicalKey.
Hydrocele.
Elsevier; (2014) https://www.clinicalkey.com/topics/urology/hydrocele.html. Accessed on 8/9/2014.

Committee on Quality Improvement, Subcommittee on Developmental Dysplasia of the Hip.
Clinical practice guideline: early detection of developmental dysplasia of the hip. Committee on Quality Improvement, Subcommittee on Developmental Dysplasia of the Hip. American Academy of Pediatrics.
Pediatrics. 2000;105(4 Pt 1):896-905. PubMed abstract

D'Agostino JA.
An evidentiary review regarding the use of chronological and adjusted age in the assessment of preterm infants.
J Spec Pediatr Nurs. 2010;15(1):26-32. PubMed abstract / Full Text

Dionne JM, Abitbol CL, Flynn JT.
Hypertension in infancy: diagnosis, management and outcome.
Pediatr Nephrol. 2012;27(1):17-32. / Full Text

Earls MF.
Incorporating recognition and management of perinatal and postpartum depression into pediatric practice.
Pediatrics. 2010;126(5):1032-9. PubMed abstract

Flynn J.
Neonatal hypertension .
Medscape; (2013) http://emedicine.medscape.com/article/979588-overview. Editor: Rosenkrantz T; Contributors: Pramanik A, Windle ML. Accessed on 8/8/2014.

Geary C, Caskey M, Fonseca R, Malloy M.
Decreased incidence of bronchopulmonary dysplasia after early management changes, including surfactant and nasal continuous positive airway pressure treatment at delivery, lowered oxygen saturation goals, and early amino acid administration: a historical cohort study.
Pediatrics. 2008;121(1):89-96. PubMed abstract

Graham JM, Scadding GK, Bull PD ed.
Pediatric ENT.
New York: Springer; 2007. 978-3-540-33038-7 http://www.springer.com/medicine/otorhinolaryngology/book/978-3-540-69...

Hagan JF, Shaw JS, Duncan PM, eds. .
Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents.
3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2008. 978-1-58110-223-9 http://brightfutures.aap.org/
Authoritative compilation of guidelines and evidence for health supervision, including developmental surveillance and screening, physical exam, laboratory and other testing, and anticipatory guidance. The Affordable Care Act of 2010 cites Bright Futures as the standard for well child and adolescent care.

Harlor AD Jr, Bower C.
Hearing assessment in infants and children: recommendations beyond neonatal screening.
Pediatrics. 2009;124(4):1252-63. PubMed abstract / Full Text

Hintz SR, Kendrick DE, Wilson-Costello DE, Das A, Bell EF, Vohr BR, Higgins RD.
Early-childhood neurodevelopmental outcomes are not improving for infants born at <25 weeks' gestational age.
Pediatrics. 2011;127(1):62-70. PubMed abstract / Full Text

Hohoff A, Rabe H, Ehmer U, Harms E.
Palatal development of preterm and low birthweight infants compared to term infants - What do we know? Part 2: The palate of the preterm/low birthweight infant.
Head Face Med. 2005;1:9. PubMed abstract / Full Text

Houk CP, Lee PA.
Early diagnosis and treatment referral of children born small for gestational age without catch-up growth are critical for optimal growth outcomes.
International Journal of Pediatric Endocrinology. 2012;1:11. PubMed abstract / Full Text

Institute of Medicine (US) Committee on Understanding Premature Birth and Assuring Healthy Outcomes.
Preterm Birth: Causes, Consequences, and Prevention.
Washington DC: National Academies Press; 2007. 978-0-309-10159-2 http://www.ncbi.nlm.nih.gov/books/NBK11362/
The extensive report provides information on risk factors and suggested strategies to reduce preterm births. PMID: 20669423

Johnson CP, Myers SM.
Identification and evaluation of children with autism spectrum disorders.
Pediatrics. 2007;120(5):1183-215. PubMed abstract
Comprehensive clinical report addressing the definition, history, epidemiology, diagnostic criteria, early signs, neuropathologic aspects, and etiologic possibilities in autism spectrum disorders. This report also provides the primary care provider with an algorithm for assistance in the early identification of children with autism spectrum disorders.

KidsMD Health Topics.
Hernia (Umbilical or Inguinal).
Boston Children's Hospital; (2014) http://www.childrenshospital.org/health-topics/conditions/hernia-umbil.... Accessed on 8/9/2014.

Klebanoff MA, Keim SA.
Epidemiology: the changing face of preterm birth.
Clin Perinatol. 2011;38(3):339-50. PubMed abstract

Kumar VH, Clive J, Rosenkrantz TS, Bourque MD, Hussain N.
Inguinal hernia in preterm infants (< or = 32-week gestation).
Pediatr Surg Int. 2002;18(2-3):147-52. PubMed abstract

Lahood A., Bryant, C.
Outpatient Care of the Premature Infant.
American Family Physician. 2007;76(8). / Full Text

Lapillonne A, O'Connor DL, Wang D, Rigo J.
Nutritional recommendations for the late-preterm infant and the preterm infant after hospital discharge.
J Pediatr. 2013;162(3 Suppl):S90-100. PubMed abstract

Lightdale JR, Gremse DA.
Gastroesophageal reflux: management guidance for the pediatrician.
Pediatrics. 2013;131(5):e1684-95. PubMed abstract / Full Text

Lindström K, Lindblad F, Hjern A.
Preterm birth and attention-deficit/hyperactivity disorder in schoolchildren.
Pediatrics. 2011;127(5):858-65. PubMed abstract

Loftin R, Chen A, Evans A, DeFranco E.
Racial differences in gestational age-specific neonatal morbidity: further evidence for different gestational lengths.
Am J Obstet Gynecol. 2012;206(3):259.e1-6. PubMed abstract

Lowry RB, Renwick DH.
Relative frequency of the Hurler and Hunter syndromes.
N Engl J Med. 1971;284(4):221-2. PubMed abstract

Martin JA, Hamilton BE, Osterman MJ, Curtin SC, Matthews TJ.
Births: final data for 2013.
Natl Vital Stat Rep. 2015;64(1):1-65. PubMed abstract

Martin RJ, Fanaroff AA, Walsh MC ed.
Fanaroff and Martin's neonatal‐perinatal medicine diseases of the fetus and infant, Vols I and II.
8th ed. Philadelphia, PA: Elsevier Mosby; 2006. 0-323-02966-3 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672777/

McCormick MC, Litt JS, Smith VC, Zupancic JA.
Prematurity: an overview and public health implications.
Annu Rev Public Health. 2011;32:367-79. PubMed abstract

McInerny T, Adam H, Campbell D, Kamat D, Kelleher K.
American Academy of Pediatrics Textbook of Pediatric Care.
1st Chapter 216 ed. American Academy of Pediatrics; 2008. 1581102682 http://www.amazon.com/American-Academy-Pediatrics-Textbook-Pediatric/d...

Mikkola K, Ritari N, Tommiska V, Salokorpi T, Lehtonen L, Tammela O, Pääkkönen L, Olsen P, Korkman M, Fellman V.
Neurodevelopmental outcome at 5 years of age of a national cohort of extremely low birth weight infants who were born in 1996-1997.
Pediatrics. 2005;116(6):1391-400. PubMed abstract

National Eye Institute.
Facts About Retinopathy of Prematurity (ROP).
(2015) https://www.nei.nih.gov/health/rop/rop. Accessed on 1/26/2015.

Nickavar A, Assadi F.
Managing hypertension in the newborn infants.
Int J Prev Med. 2014;5(Suppl 1):S39-43. PubMed abstract / Full Text

Norman M.
Preterm birth--an emerging risk factor for adult hypertension?.
Semin Perinatol. 2010;34(3):183-7. PubMed abstract

Nwafor-Anene VN, DeCristofaro JD, Baumgart S.
Serial head ultrasound studies in preterm infants: how many normal studies does one infant need to exclude significant abnormalities?.
J Perinatol. 2003;23(2):104-10. PubMed abstract

Paulsson L, Bondemark L, Söderfeldt B.
A systematic review of the consequences of premature birth on palatal morphology, dental occlusion, tooth-crown dimensions, and tooth maturity and eruption.
Angle Orthod. 2004;74(2):269-79. PubMed abstract

Phillips RM, Goldstein M, Hougland K, Nandyal R, Pizzica A, Santa-Donato A, Staebler S, Stark AR, Treiger TM, Yost E.
Multidisciplinary guidelines for the care of late preterm infants.
J Perinatol. 2013;33 Suppl 2:S5-22. PubMed abstract / Full Text
Gives guidelines for caring for late preterm infants in the hospital and after discharge. Includes short- and long-term follow up; each care recommendation is associated with counseling points to share with the family.

Pickering LK, Baker CJ, Kimberlin DW, Long SS ed.
Red Book: 2012 Report of the Committee on Infectious Diseases.
29th ed. Elk Grove Village, IL: American Academy of Pediatrics; 2012. 158110703X

Porter TF, Fraser AM, Hunter CY, Ward RH, Varner MW.
The risk of preterm birth across generations.
Obstet Gynecol. 1997;90(1):63-7. PubMed abstract

Ritchie SK.
Primary care of the premature infant discharged from the neonatal intensive care unit.
MCN Am J Matern Child Nurs. 2002;27(2):76-85. PubMed abstract
Covers the basic principles of growth, nutrition and feeding, development, and complications common to premature infants. Additionally, the NICU to home transition is addressed as well as the unique early behaviors and cues common to the preterm infant.

Rogers GF.
Deformational plagiocephaly, brachycephaly, and scaphocephaly. Part I: terminology, diagnosis, and etiopathogenesis.
J Craniofac Surg. 2011;22(1):9-16. PubMed abstract

Rogers GF.
Deformational plagiocephaly, brachycephaly, and scaphocephaly. Part II: prevention and treatment.
J Craniofac Surg. 2011;22(1):17-23. PubMed abstract

Saari TN.
Immunization of preterm and low birth weight infants. American Academy of Pediatrics Committee on Infectious Diseases.
Pediatrics. 2003;112(1 Pt 1):193-8. PubMed abstract / Full Text

Salaam S, Ross RD.
Persistent newborn pulmonary hypertension .
Medscape; (2014) http://emedicine.medscape.com/article/898437-overview. Editors: Windle ML, Pramanik AK; Chief Editor: Berger S; Contributors: Steinhorn RH. Accessed on 8/8/2014.

Sauve, R.
Routine screening cranial ultrasound examinations for the prediction of long term neurodevelopmental outcomes in preterm infants.
Paediatr Child Health. 2001;6(1):39-52. PubMed abstract / Full Text

Schaaf CP, Scott DA, Wiszniewska J, Beaudet AL.
Identification of incestuous parental relationships by SNP-based DNA microarrays.
Lancet. 2011;377(9765):555-6. PubMed abstract

Section on Ophthalmology.
Screening examination of premature infants for retinopathy of prematurity.
Pediatrics. 2006;117(2):572-6. PubMed abstract / Full Text
From the Section on Ophthalmology American Academy of Pediatrics, American Academy of Ophthalmology, American Association for Pediatric Ophthalmology and Strabismus.

Stewart AL, Brion LP.
Routine use of diuretics in very-low birth-weight infants in the absence of supporting evidence.
J Perinatol. 2011;31(10):633-4. PubMed abstract

Suchy FJ.
Neonatal cholestasis.
Pediatr Rev. 2004;25(11):388-96. PubMed abstract

TeKolste T, Bragg J, Wendel S.
Extremely Low Birth Weight NICU Graduate.
2004; Washington State Department of Health, Children with Special Health Care Needs Program; http://www.medicalhome.org/4Download/cec/elbw.pdf
Supplement to: Low Birth Weight Neonatal Intensive Care Graduate. Specifically addresses post-NICU care of ELBW infants who: 1) experienced the usual complications associated with extreme prematurity and/or extreme low birth weight, and 2) were discharged home in a relatively healthy condition.

Trachtenbarg DE, Golemon TB.
Care of the premature infant: Part I. Monitoring growth and development.
Am Fam Physician. 1998;57(9):2123-30. PubMed abstract / Full Text

University of Washington and Mary Bridge Hospital and Health Center .
Low Birth Weight Neonatal Intensive Care Unit Graduate .
Washington State Consensus Project. Sept. 1998 / Updated 2005. / http://www.medicalhome.org/4Download/cec/CEC.pdf
Education and support for health care providers, parents, third-party payers, and policy makers interested in care of low birth weight infants and children.

Wilson SL, Cradock MM.
Review: Accounting for prematurity in developmental assessment and the use of age-adjusted scores.
J Pediatr Psychol. 2004;29(8):641-9. PubMed abstract / Full Text

Wong HS, Huertas-Ceballos A, Cowan FM, Modi N.
Evaluation of early childhood social-communication difficulties in children born preterm using the Quantitative Checklist for Autism in Toddlers.
J Pediatr. 2014;164(1):26-33.e1. PubMed abstract

de Jong F, Monuteaux MC, van Elburg RM, Gillman MW, Belfort MB.
Systematic review and meta-analysis of preterm birth and later systolic blood pressure.
Hypertension. 2012;59(2):226-34. PubMed abstract / Full Text