Premature Infant Follow-Up
Guidance providing follow-up care for children and adolescents born prematurely
Babies are surviving increasingly premature births due to the dramatic improvements in neonatal intensive and neurodevelopmental care techniques, including the use of prenatal steroids, surfactant, and continuous positive airway pressure (CPAP). This module focuses on the primary outpatient follow-up care of infants born at extremely low gestational ages and weights - typically ≤28 weeks and/or 1500 grams (about 3 pounds) - although much of this information also pertains to preterm infants born later in gestation.
Key Points
Adjusted age for assessment, chronological age for immunizations
In the first 2 years, make judgments about typical or atypical
findings based on the adjusted age (not the chronological age), particularly for
the neurologic and developmental exams. However, administer immunizations
according to chronological age.
Feeding and fortification tips
- For premature infants with lower birth weights, continued post-discharge growth of at least 10 g/kg/d is reasonable. [Lapillonne: 2013] Slow, steady weight gain is preferred.
- A general rule is to keep the infant on premature formula or fortified breast milk until the infant’s growth reaches the 10th percentile for uncorrected age.
- Advance infant feedings according to the patient’s adjusted age, not their chronologic age.
Audiology follow-up
Refer all infants who stayed in the NICU
5 days or more or who have other risk factors or parental concerns by 9 months
for diagnostic audiology testing, even if they passed the hearing screening in
the NICU. (See Table 1, page 19 in [Joint: 2019].
Short stature
Up to 85% of infants
born SGA will “catch up” by age 2. For those with short stature after 2 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. [Boguszewski: 2021]
Children with Short Stature Born Small for Gestational Age provides additional information.
It is critical to closely monitor muscle tone 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. The Hammersmith Neurologic Exam (HINE) (

Get to know the eligibility criteria for the closest neonatal follow-up clinic and whether or not they offer traveling or telehealth services if it is not close by. Neonatal Follow-up Programs (see NW providers [0]) are appropriate and needed for all children meeting criteria, not just children with known developmental delays or complex medical conditions. Many children who appear to be developing typically have issues that can be addressed by early recognition and intervention.
Home oxygen therapy is a safe and relatively convenient means for maximizing growth and development in infants with Bronchopulmonary Dysplasia. However, studies and guidelines are limited for supplemental oxygen beyond the newborn period. In general, wean oxygen in the office based on spot checks and infant growth. If the infant struggles to wean from oxygen or shows other respiratory symptoms, refer to Pediatric Pulmonology (see NW providers [0]). Some Neonatal Follow-Up Programs have a bronchopulmonary dysplasia program within them that follows patients and weans their oxygen.
Diagnosis
The initial diagnosis of prematurity and many related conditions can be found in the NICU course and discharge summary. Premature infants, particularly those born extremely early, often have or are at risk of developing bronchopulmonary dysplasia, retinopathy of prematurity, intraventricular hemorrhage, cerebral palsy, necrotizing enterocolitis, and other complications that require follow-up in the neonatal period and beyond. More details about ongoing monitoring and evaluations are in the Treatment section below.
Diagnostic Criteria & Classification
- Premature (Preterm): an infant born at an estimated gestational age of less than 37 weeks
- Early Term: between 37 weeks 0 days and 38 weeks 6 days [ACOG: 2013]
- Late Preterm: an infant born between 34 - 36 6/7 weeks gestation. "Late preterm" replaces earlier terminology of "near term."
- Moderate to late preterm: 32 to <37 weeks
- Very preterm: 28 to <32 weeks
- Extremely preterm: <28 weeks
- Tiny baby: < or = 23 weeks [International: 2023]
- Low Birth Weight (LBW): <2500 grams (5 lbs, 8 oz)
- Very Low Birth Weight (VLBW): <1500 grams (3 lbs, 5 oz)
- Extremely Low Birth Weight: <1000 grams (2 lbs, 3 oz)
Diagnostic Testing & Screening
Labs
- Newborn screening: For information about the conditions tested, see the Portal's Newborn Disorders. This varies by state but is recommended once between 1-2 days of life and again 8-21 days of life for all infants.
- Hemoglobin/hematocrit to screen for anemia. Be aware of the timing of blood transfusions and if the infant is receiving iron supplementation. The AAP advises anemia screening for all infants at ages 9-12 months and repeated screening between the ages of 1 and 5 years for patients at risk. Early screening around 4 months of life is advised for premature infants and infants small for gestational age. (See the Bright Futures/AAP Periodicity Schedule.)
Imaging
- Congenital heart disease screening: Pre- and post-ductal oximetry may suggest congenital heart disease; an echocardiogram would help confirm anatomy. This test is usually completed in the hospital prior to discharge.
- Screening for developmental dysplasia of the hip (DDH): Pelvic (hip) ultrasonography screens for DDH for infants born breech, with multiple gestations or 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 of screens and follow-up actions.
- Head ultrasonography to screen for intraventricular hemorrhage, hydrocephalus, structural anomalies, etc. Infants born at 30 [Lahood: 2007] to 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]
Hearing
Infants who did not pass an initial hearing test
in the NICU should have repeat screening completed within 2-4 weeks.
Follow-up testing for high-risk premature infants is recommended at 9
months, 2 years, and 4 years (adjusted ages). [Journal: 2019] Refer sooner if there are language or
hearing concerns. Premature infants are considered high risk if there is a
history of any of the following:
- Hypoxic-ischemic encephalopathy (HIE)
- Extracorporeal membrane oxygenation (ECMO) use
- Meningitis
- Congenital cytomegalovirus (CMV)
- Hyperbilirubinemia (specifically for infants with a 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
States that meet the 1-3-6 benchmark should strive to meet a 1-3-6 month timeline. Goals include:
- All infants should undergo hearing screening prior to discharge from the birth hospital and no later than one month of age, using physiologic measures with objective determination of outcome.
- All infants whose initial birth screen and any subsequent rescreening warrant additional testing should have appropriate audiologic evaluation to confirm the infant's hearing status no later than 3 months of age.
- A concurrent or immediate comprehensive otologic evaluation should occur for infants who are confirmed to be deaf or hard of hearing.
- All infants who are deaf or hard of hearing in one or both ears should be referred immediately to early intervention in order to receive targeted and appropriate services by 6 months.
For more information on how hearing is tested and normal milestones for hearing and language, see Hearing Screening.
Vision
- Infants less than 30 weeks get ROP screening in the hospital by 32 weeks postmenstrual age or 5 weeks postnatal age, whichever comes last. Follow-up assessments for retinopathy of prematurity (ROP) are based on initial findings. See Premature Infant and Retinopathy of Prematurity for information about risk factors and treatment considerations.
- For premature infants who were not identified with ROP, routine well-child checks should include an eye exam that screens for strabismus, difficulty with visual fixation/following and acuity, and atypical eye movements.
- All infants born weighing 1500 grams or less, as well as those affected by intraventricular hemorrhage (IVH), should be considered for ophthalmology referral within 4 to 6 months after discharge. Even in infants whose ROP exams reveal the resolution of ROP, follow-up with ophthalmology is recommended due to the high prevalence of problems of visual acuity and strabismus in this population.
Car seat testing
Oximetric evaluation of ability to
safely transport in car seat vs. car bed should be performed prior to
hospital discharge for infants born <37 weeks gestation. It may need
to be repeated in the outpatient clinic to wean an infant discharged on
oxygen for use in the car. Guidelines include:
- Oxygen saturation not falling <90% for >10 seconds or heart rate < 80 bpm for >10 seconds on room air for at least 90 minutes or the duration of the car ride (whichever is longer).
Developmental screening
According to the AAP's
recommended schedule for Developmental Screening,
the primary care clinician should perform developmental screening at the
child's adjusted age rather than chronologic age until 30 months (or 24
months if there will be no 30-month evaluation). Children enrolled in
Neonatal Follow-Up Programs will undergo formal developmental testing
through the program.
Consider Autism Screening and screening for disorders of hyperactivity and the ability to focus. (Infant & Early Childhood Social-Emotional Screening and Developmental Screening have links to screens and guidance for responding to a positive screen.
Testing for 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:
-
Edinburgh Postnatal Depression Scale (English) (
120 KB) or the Edinburgh Postnatal Depression Scale (Spanish) (
54 KB) - free, 10-question screening tool
- PHQ-9 - free and available in many languages from Patient Health Questionnaire (PHQ) Screeners (select screen from the drop-down menu on the right)
Given the peak times for postpartum depression, screening should be integrated at the 1-, 2-, 4-, and 6-month visits. [Earls: 2019] Management of positive screens and additional information can be found at Postpartum Depression Screening.
- Cardiac and/or respiratory arrest
- Complex congenital heart disease
- Heart murmur that is still present at discharge and cause, if known
- Necrotizing enterocolitis (NEC) with perforation
- Bronchopulmonary dysplasia / Chronic lung disease of prematurity
- Pulmonary hypertension
- Prolonged period on ventilator for respiratory failure (beyond the time of initial stabilization of the transitioning infant)
- Chronic hypoxemia and discharged on home supplemental 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
- Cerebral Palsy
- Current feeding plan, dietary supplements, and need for feeding therapy and/or tube feedings
- Surgical scars
- Breech delivery
- Developmental delays
- Sensory disorders (hearing or vision)
- Neurobehavioral difficulties
- Neurological disorders, including cerebral palsy, attention deficits, and seizures
- Head shape deformities
- Hip dysplasia
- Cardiovascular disorders, including patent ductus arteriosus and persistent pulmonary hypertension
- Hypertension
- Respiratory disorders, including bronchopulmonary dysplasia (aka chronic lung disease of prematurity), prematurity-related respiratory disease, sleep-disordered breathing (obstructive and/or central sleep apnea), and chronic hypoxemia
- Gastrointestinal disorders, including dysphagia, reflux, and surgically related bowel disorders
- Anemia: Be aware of the 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, testing reticulocyte hemoglobin, iron studies, reticulocyte counts, or ferritin will increase sensitivity.
- 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
Prognosis
Prematurity is the second leading cause of infant mortality in the US, behind congenital malformations. [Mathews: 2017] The infant mortality rate declined from 2005 to 2014, according to data from the National Child Health Survey, from 113.5 to 104.6/1000 live births. The greatest contribution to this decline (69%) can be attributed to improvements for infants born <32 weeks, and this was true for the entire population and for each race and ethnicity. Another 31% of the decline in infant mortality is due to improvements in the gestational age distribution. [Callaghan: 2017] Survival and outcomes for children born very prematurely have improved dramatically over the past 4 decades. Yet, 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. In a multi-centered, longitudinal study of children born less than 29 weeks gestation, the overall survival rate has increased from 2012 to 2018. Of those who were evaluated at 22-26 months of age, adjusted, 48.7% had no or mild neurodevelopmental impairment, 29.3% had moderate neurodevelopmental impairment, and 21.2% had severe neurodevelopmental impairment. 8.4% had moderate to severe CP (GMFCS level III- V), 1.5% had bilateral blindness, 2.5% required bilateral hearing aids or had cochlear implants, and 49.9% had been rehospitalized. [Bell: 2022]
Primary care clinicians have unique opportunities to prevent or limit secondary disabilities in preterm infants. [Novak: 2017] Primary care physicians have an important role in detecting early risk factors for cerebral palsy, beginning with knowledge of the initial history and NICU course. Prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being is essential. [Novak: 2017] Using tools with the highest evidence, the age of diagnosis of CP can be decreased from 12-24 months to a corrected age of 6 months or earlier. [Byrne: 2017]
Treatment & Management
Often, during prolonged NICU hospitalizations, families become attached to and dependent upon the NICU staff, making the transition to primary care difficult. To help with the transition, the medical home clinician would ideally communicate with parents and the NICU staff or visit the infant before NICU discharge. The primary care team/medical home often needs to manage supplemental oxygen, feedings through gastrostomy or jejunostomy tubes, specialized immunizations, specialized formulas, and care coordination with multiple subspecialists and/or developmental therapists. Ideally, the NICU discharge summary would indicate needed subspecialty follow-up (e.g., cardiology, pulmonology, ophthalmology). Ongoing medical home care includes coordination of care specialists, studies, and programs such as a Neonatal Follow-Up Clinic to avoid service duplications.
The initial follow-up visit is optimal within 1 to 2 days of leaving the hospital and 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 also be encouraged to obtain vaccines). 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] In general, vaccinations should be given based on the child's actual age and not their corrected age.
- Advance infant feedings according to the patient's adjusted age, not their chronologic age.
- A general rule is to keep the infant on premature formula or fortified breast milk until the infant's growth reaches the 10th percentile for uncorrected age. Diluting the premature infant 22 kcal/oz formula to 20 kcal/oz can continue to provide higher protein in premature infants who gain weight rapidly but could still benefit from added protein to support their linear growth. Frequent monitoring of the infant's growth rates, feeding volumes and skills, and adjusting nutrition accordingly, are important roles of the medical home team.
- 33 oz of 20 kcal/oz formula
- 30 oz of 22 kcal/oz
- 26 oz of 22 kcal/oz formula
- 24 oz of 24 kcal/oz
- 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. If available, the Fenton growth chart can be used as well.
- For premature infants with lower birth weights, continued post-discharge growth of at least 10 g/kg/d is reasonable. [Lapillonne: 2013] For infants with IUGR, a slow, steady weight gain is preferred as rapid weight gain can be related to adult chronic disease and obesity.
- 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 Premature Infant Growth Charts.
- If the hernia remains reducible, surgery is not required. Typically, umbilical hernias self-resolve over the first few years of life.
- Diastasis recti (incomplete closure of the abdominal wall muscles) usually resolves in the first couple months of life. This benign condition does not require surgical intervention.
Respiratory rate generally follows corrected gestational age norms. [Trachtenbarg: 1998]
Apnea of prematurity and SIDS risk
Preterm infants exhibit various breathing patterns, including normal breathing, periodic breathing (which involves short pauses followed by rapid breathing), and more concerning hypoventilatory and apneic episodes. Apnea is defined as no breathing for at least 20 seconds or a shorter pause associated with bradycardia and color changes such as pallor or cyanosis. These episodes are often mixed central and obstructive apnea and can be worsened by infections and metabolic conditions. It is necessary for infants to demonstrate several days of no apnea before leaving the NICU. Although premature infants are at a higher risk of Sudden Infant Death Syndrome (SIDS), apnea of prematurity is not directly linked to SIDS. Peak incidence of SIDS in extreme preterm infants starts at 40 weeks post-conception age, while in term infants, it starts at 44 weeks post-conception age and lasts for 3-4 months. Monitoring may be discontinued safely by 43-44 weeks post-conception age. [Bright: 2017]
- Oxygen saturation should be measured in clinic for premature infants requiring supplemental oxygen, noting whether supplemental oxygen was used during the oximetry.
- Assess respiratory rate and work of breathing, including subcostal and supraclavicular retractions, head bobbing, or nasal flaring. Listen for crackles, rhonchi, wheezing, or stridor.
- For families monitoring at home, inquire about desaturations, apneas, and bradycardia frequency, duration, and interventions.
- Palivizumab is given in monthly intramuscular injections during the RSV season, which generally occurs during fall, winter, and spring in most locations in the United States. For the latest palivizumab guidance, please consult the Updated Guidance for Palivizumab Prophylaxis Among Infants and Young Children at Increased Risk of Hospitalization for Respiratory Syncytial Virus Infection.
- See also Pneumococcal Disease (CDC) and Immunization Schedules (CDC).
- Grade 1 BPD includes infants who require nasal cannula flow of <2 L/min regardless of FiO2.
- Grade 2 BPD includes infants who require nasal cannula flow of >2 L/min or noninvasive respiratory support (nCPAP or NIPPV) regardless of FiO2.
- Grade 3 BPD includes infants who require invasive PPV. [Higgins: 2018]
- Use chronological age norms for heart rate. [Trachtenbarg: 1998]
- Use blood pressure charts with age-appropriate norms; daily home blood pressure monitoring can also help with babies discharged on antihypertensive medication. [Flynn: 2016] Prognosis is usually good.
-
- Neonatal Hypertension (Medscape) (log-in required) provides a table of Neonatal Blood Pressures and Potential Treatment Parameters; to access, click "Tables" on left menu.
- Pediatric Hypertension (Medscape) provides a table of Normal Blood Pressure Percentile Curves for Older Infants [Lowry: 1971]. To access, click "Tables" on left menu.
- Note the grade (1-6) of any murmurs. Implementation of universal screening for congenital heart disease is helping identify some but not all cardiovascular lesions. The most common heart murmurs heard in premature infants include the patent ductus arteriosus and physiologic peripheral pulmonary stenosis. Murmurs often come and go within the first 18 months of life and often are benign. Seek further evaluation in murmurs that sound ominous, 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.
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), post-hemorrhagic hydrocephalus, neonatal seizure(s), neonatal stroke, periventricular leukomalacia (PVL), cerebellar injury, and porencephaly. Infants with brain injury either from before or during birth, or after complications of their neonatal care, may also develop seizures. 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] Refer infants with prematurity or concerns of developmental delays to Early Intervention services for targeted therapies (Early Intervention for Children with Disabilities/Delays (see NW providers [3]).

- Infants born before 29 weeks gestation who are younger than 12 months at the start of the RSV season. Infants born during RSV season may require less than 5 doses.
- Infants born before 32 weeks gestation who have chronic lung disease defined as requiring >21% oxygen for at least the first 28 days of life. (This definition may be changing; see BPD above). Consider treatment during the second year of life in these infants if they still require medical support for their lungs in the 6 months prior to the second RSV season.
- All infants with hemodynamically significant congenital heart disease born less than 12 months prior to the start of RSV season. [American: 2014]
- Delayed early language development
- Auditory processing deficits, generally diagnosed starting at age 7
- 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
- Social communication delays
- Developmental preschool: Developmental preschool is provided by the public school district in which the family resides for children over age 3 with developmental delays. Developmental preschool provides a structured learning environment with peer interaction and modeling by "typically" developing children. Therapies such as physical, occupational, and speech-language therapy are provided in the school setting when needed. Parental support is provided to families as well. The local school district operates these programs.
- 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 school resources: Resources for learning disabilities are usually established around 7 years of age when IQ scores have become more reliable (barring extreme environmental challenges), and IQ subtests and academic achievement tests can distinguish learning strengths and weaknesses, which may respond to specialized instruction
- To determine if a child qualifies for special education services, a parent may request a
free developmental or psychoeducational evaluation from the school district in
which they reside. Medical providers who diagnose or suspect a child has a
disability may also request an evaluation as outlined in IIDEA Parent Guide (National Center for Learning Disabilities) (
1.1 MB). Child Find requires all school districts to identify, locate, and evaluate all children with disabilities.
- Inadequate sleep: Sleep Medications and Sleep Issues provide further diagnosis and management information.
- Constipation: Constipation provides further diagnosis and management information.
- Seizures: Seizures/Epilepsy provides further diagnosis and management information.
- Side effects of medications
- Gastroesophageal reflux: Gastroesophageal Reflux Disease provides further diagnosis and management information.
- Skin conditions causing chronic irritation: Skin and Wound Care for CYSHCN provides further diagnosis and management information.
- Chronic ear infections and other sources of pain
- Physical neglect, sexual or other physical abuse: Foster Care provides further diagnosis and management information for these toxic stress issues.
- Oral aversion: feeding refusal. See Nutrition/Growth/Bone.
- <1500 grams
- <32 weeks
- High-grade IVH
- Hydrocephalus
- Severe illness (the need for ECMO)
- Hypoxia
- Infection, particularly CNS infection
- Periventricular leukomalacia (PVL)
- Stroke
- Extreme prematurity, as well as prolonged oxygen use
- Infants with 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 have suffered other neurological complications.
- Educating the family regarding the need for:
- Speech and language therapy
- Hearing amplification to overcome hearing loss
- Evaluation by an Ear, Nose, and Throat Specialist (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
- Visually inspect for plagiocephaly, brachycephaly, or asymmetry. Palpate for premature fusion of sutures (craniosynostosis, or early closure of 1 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 Cranial Deformation and Craniosynostosis. Advise against using head-shaping pillows and positioners due to safety concerns.
- Palpate for tight neck muscles (torticollis) and ask about a preference to position the head in one direction. Advise range of motion exercises as the infant matures, such as "tummy time," with the head positioned to each side when prone.
- 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.
Services & Referrals
- State Part C Early Intervention Coordinators
- Baby Watch Early Intervention Locations (UDHHS)
- Early Head Start National Resource Center (EHS NRC)
Audiology
(see NW providers
[3])
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.
Behavioral Therapies
(see NW providers
[1])
Refer children who need assistance with specific behaviors, mood
disorders, or problem-solving skills. Children with autism spectrum disorder
benefit from Applied Behavioral Analysis.
Developmental - Behavioral Pediatrics
(see NW providers
[1])
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.
Early Intervention for Children with Disabilities/Delays
(see NW providers
[3])
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. Refer infants
or children under the age of 3 with visual, speech, or language impairment.
General Counseling Services
(see NW providers
[1])
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.
Head Start/Early Head Start
(see NW providers
[0])
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.
Medical Genetics
(see NW providers
[1])
Offer a consultation with a 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.
Mental Health Evaluation/Assessment
(see NW providers
[0])
Referral can be useful for evaluation of delayed social
skills.
Neonatal Follow-up Programs
(see NW providers
[0])
The NICU typically does referral based on inclusion criteria, such
as extreme prematurity. Primary care clinicians can also refer eligible
premature infants for additional assessment and care coordination. The
services/disciplines offered may include medical evaluation, physical therapy,
occupational therapy, developmental psychology, speech pathology, and
neurology.
Occupational Therapy
(see NW providers
[1])
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 Cardiology
(see NW providers
[0])
Consult for assistance in diagnosing and managing persistent
cardiovascular problems, such as pulmonary hypertension or persistent ductal or
septal defects, and for determining timing of surgery.
Pediatric Dentistry
(see NW providers
[2])
Referral is helpful for infants and children with abnormal
dentition or sensory issues affecting their ability to cooperate with dental
care and examinations.
Pediatric Gastroenterology
(see NW providers
[0])
Refer for evaluation and the collaborative management of
necrotizing enterocolitis, short bowel syndrome, congenital gastrointestinal
abnormalities with perforation, or failure to thrive.
Pediatric Nephrology
(see NW providers
[0])
Consultation is helpful in evaluating and managing kidney and
urinary tract issues, such as nephrocalcinosis, hypertension, reflux, and
abnormal kidney function.
Pediatric Neurology
(see NW providers
[0])
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 NW providers
[1])
Refer for shunt management and ongoing evaluation of
hydrocephalus, as well as evaluation of atypical head shape.
Pediatric Ophthalmology
(see NW providers
[1])
Refer for expertise in evaluating and managing ophthalmologic
complications of prematurity, especially retinopathy of prematurity and
strabismus. Premature infants with retinopathy of prematurity should be referred
even if cleared of the ROP in the NICU.
Pediatric Orthopedics
(see NW providers
[4])
Refer for help managing congenital malformations, suspected hip or
spine problems, and for routine care and management of children with cerebral
palsy.
Pediatric Physical Medicine & Rehabilitation
(see NW providers
[3])
Refer to pediatric rehabilitation (“rehab") doctors or
physiatrists for more in-depth assessment of musculoskeletal, neurologic,
genetic, or conditions resulting in abnormal muscle tone and spasticity, such as
cerebral palsy.
Pediatric Plastic Surgery
(see NW providers
[3])
Refer to a plastic surgeon, neurosurgeon, or craniofacial
specialist to evaluate and manage cranial deformities.
Pediatric Urology
(see NW providers
[0])
Refer for evaluation and surgical management of persistent
urologic problems such as urinary reflux, posterior urethral valves and
hydronephrosis, inguinal hernias, or persistent hydroceles.
Physical Therapy
(see NW providers
[0])
Referral can help evaluate delays in gross motor function,
improving mobility, and customizing devices that enhance mobility.
Speech - Language Pathologists
(see NW providers
[4])
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.
ICD-10 Coding
- 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 about weight or gestational age. Coding for Disorders of Newborn Related to Short Gestation and Low Birth Weight (icd10data.com) provides these coding details.
Resources
Information & Support
Related Portal Content
The following Portal topics contain diagnosis and management information for conditions often related to premature infant follow-up care:
- Postpartum Depression Screening
- Developmental Screening
- Cerebral Palsy
- Hearing Screening
- Sleep Issues
- CPAP & BIPAP Therapy for Children
- Cranial Deformation and Craniosynostosis
- Bronchopulmonary Dysplasia
- Premature Infant and Retinopathy of Prematurity
- Children with Short Stature Born Small for Gestational Age
- Nutritional Needs of the Preterm Infant
- Prevention of Recurrent Preterm Birth
- Premature Infant Growth Charts
Answers to questions that families may frequently ask can be found at:
- Premature Infant Follow-Up (FAQ)
- Cerebral Palsy (FAQ)
- Anxiety Disorders & Attention Deficit Hyperactivity Disorder (ADHD)
- School Accommodations: IEPs & 504s
Patient Education
Tips for Encouraging Speech and Language Development (Pathways.org) ( 466 KB)
Two-page brochure with speech and hearing milestones and tips for assisting with their development.
Cerebral Palsy Channel; developed by the Cerebral Palsy Foundation
This free app offers information from the world's leading experts on intervention and therapy, communication, building independence,
and more.
Tools
Edinburgh Postnatal Depression Scale (English) ( 120 KB)
A self-administered, 10-question, 5-minute screen for maternal depression with scoring instructions. Free, may be printed
without permission.
Edinburgh Postnatal Depression Scale (Spanish) ( 54 KB)
A Spanish, self-administered, 10-question, 5-minute screen for maternal depression with scoring instructions. Free, may be
printed without permission.
Patient Health Questionnaire (PHQ) Screeners
Free screening tools in many languages with scoring instructions to be used by clinicians to help detect mental health disorders.
Select from right menu: PHQ, PHQ-9, GAD-7, PHQ-15, PHQ-SADS, Brief PHQ, PHQ-4, PHQ-8.
Screening for Developmental Hip Dysplasia—Clinical Algorithm (AAP)
Algorithm with screening recommendations and recommended actions; American Academy of Pediatrics.
Hammersmith Neurologic Exam (HINE) ( 254 KB)
This exam consists of 26 items that assess different aspects of neurological function. The HINE is aimed to be used for infants
between 3 and 24 months of age.
Services for Patients & Families Nationwide (NW)
Service Categories | # of providers* in: | NW | Partner states (4) (show) | | NM | NV | RI | UT | |
---|---|---|---|---|---|---|---|---|---|
Audiology | 3 | 22 | 8 | 24 | 23 | ||||
Behavioral Therapies | 1 | 17 | 21 | 31 | 36 | ||||
Developmental - Behavioral Pediatrics | 1 | 2 | 3 | 12 | 9 | ||||
Early Intervention for Children with Disabilities/Delays | 3 | 34 | 31 | 13 | 52 | ||||
General Counseling Services | 1 | 10 | 207 | 30 | 307 | ||||
Head Start/Early Head Start | 10 | 57 | 18 | 27 | |||||
Medical Genetics | 1 | 2 | 5 | 4 | 7 | ||||
Mental Health Evaluation/Assessment | 8 | 10 | 24 | 132 | |||||
Neonatal Follow-up Programs | 2 | 1 | 3 | ||||||
Occupational Therapy | 1 | 17 | 27 | 20 | 36 | ||||
Pediatric Cardiology | 3 | 4 | 17 | 4 | |||||
Pediatric Dentistry | 2 | 6 | 32 | 41 | 50 | ||||
Pediatric Gastroenterology | 2 | 5 | 18 | 2 | |||||
Pediatric Nephrology | 2 | 2 | 10 | 1 | |||||
Pediatric Neurology | 5 | 5 | 17 | 7 | |||||
Pediatric Neurosurgery | 1 | 2 | 4 | 3 | 2 | ||||
Pediatric Ophthalmology | 1 | 6 | 6 | 8 | 4 | ||||
Pediatric Orthopedics | 4 | 7 | 8 | 16 | 10 | ||||
Pediatric Physical Medicine & Rehabilitation | 3 | 3 | 3 | 6 | 11 | ||||
Pediatric Plastic Surgery | 3 | 5 | 4 | 4 | 5 | ||||
Pediatric Pulmonology | 4 | 4 | 6 | 3 | |||||
Pediatric Urology | 13 | 1 | 3 | ||||||
Physical Therapy | 12 | 12 | 5 | 40 | |||||
Speech - Language Pathologists | 4 | 23 | 14 | 32 | 65 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Studies
Clinical Trials for Preterm Infants (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.
Helpful Articles
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; https://depts.washington.edu/dbpeds/ELBW-NICU-Graduate.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.
Villar J, Giuliani F, Barros F, Roggero P, Coronado Zarco IA, Rego MAS, Ochieng R, Gianni ML, Rao S, Lambert A, Ryumina I,
Britto C, Chawla D, Cheikh Ismail L, Ali SR, Hirst J, Teji JS, Abawi K, Asibey J, Agyeman-Duah J, McCormick K, Bertino E,
Papageorghiou AT, Figueras-Aloy J, Bhutta Z, Kennedy S.
Monitoring the Postnatal Growth of Preterm Infants: A Paradigm Change.
Pediatrics.
2018;141(2).
PubMed abstract
Authors & Reviewers
Authors: | Sarah Winter, MD |
Christopher Torsitano, MD | |
Reviewer: | Mary Ann Nelin, MD |
2020: update: Jennifer Goldman, MD, MRP, FAAPA; Molly O'Gorman, MDR |
2020: update: Sarah Winter, MDA; Mary Ann Nelin, MDA; Annette Haban Bartz, MS, RD, LD, CLCCA; Khanh Lai, MD, FAAPR; Erin Clark, MDR |
2015: first version: Jennifer Goldman, MD, MRP, FAAPA; Sarah Winter, MDA; Mary Ann Nelin, MDR |
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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.
Hamrick SEG, Sallmon H, Rose AT, Porras D, Shelton EL, Reese J, Hansmann G.
Patent Ductus Arteriosus of the Preterm Infant.
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Hearing assessment in infants and children: recommendations beyond neonatal screening.
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Comprehensive clinical report addressing the prevalence, clinical symptoms, screening and diagnosis, etiologic evaluation,
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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.
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The extensive report provides information on risk factors and suggested strategies to reduce preterm births.
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Tiny Baby Collaborative.
(2023)
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Resolution of vocal fold immobility in preterm infants.
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Supplement to: Low Birth Weight Neonatal Intensive Care Graduate. Specifically addresses post-NICU care of ELBW infants who:
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