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Premature Infant Follow-Up

Introduction

Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Premature Infant Follow-Up module, which is written for primary care clinicians but also may be of help to parents and family members.

What is prematurity and what causes it?

Preterm infants are those born before 37 weeks of gestation. There are many factors that are associated with premature births and preterm labor including having twins/multiple births, previous preterm births, some infections, some chronic conditions, and other factors. With the advent of neonatal intensive care units (NICU) and specific strategies to improve care, such as prenatal steroids, surfactant, continuous positive airway pressure (CPAP), and neurodevelopmental care techniques, babies are surviving increasingly-earlier births.

What are the symptoms of prematurity?

There are different conditions that commonly affect premature infants after they are born. The symptoms of those conditions will vary.

How is it diagnosed?

Preterm infants are those born before 37 weeks of gestation. The diagnoses of the conditions that are common in premature infants will vary.

What is the prognosis?

Survival and outcomes for children born very prematurely have improved dramatically over the past 4 decades. The prognosis for preterm infants has improved but is complex and varied. Associated complications can occur following delivery or may unfold as chronic disabilities including 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 [Mikkola: 2005], [Hintz: 2011], and approximately 50% will have significant intellectual disability (IQ <70). [Moreno: 1996] There is not good data currently on what percentage of infants with extreme prematurity end up without significant complications.

What is the risk for other family members or future babies?

An important step in evaluating the extremely premature infant is a maternal history to determine her risk for having another premature infant. If more 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 are at increased risk of giving birth prematurely also. [Institute: 2007]

What treatments/therapies/medications are recommended or available?

The treatment of the conditions that are common in prematurity will vary. The Premature Infant Follow-Up module addresses 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), though much of the information will pertain also to preterm infants born later in gestation. Infants born preterm are at risk for, or will have, conditions such as bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), intraventricular hemorrhage (IVH), hypoxic-ischemic encephalopathy (HIE), necrotizing enterocolitis (NEC), and others that require follow-up in the neonatal period and beyond. These children and families often benefit from specialized follow-up clinic services that are designed to detect and address developmental delays, feeding difficulties, growth problems, vision impairment, hearing loss, and cerebral palsy (CP). The medical home and primary care clinician will often need to manage supplemental oxygen, feedings through gastrostomy (G-tube) or jejunostomy tubes, specialized immunizations, and specialized formulas, as well as coordinate the care provided by multiple subspecialists and/or developmental therapists.

How will my child and our family be impacted?

Having an infant hospitalized after birth is stressful for families. However, despite the long-awaited arrival in the home, stress may increase for caregivers after the baby’s discharge from the NICU. Sometimes the family feels very attached to, or dependent on, the NICU care team and may feel isolated or fear that they are unable to adequately care for the infant after discharge. Maternal postpartum depression may develop or increase once the preterm infant comes home and occasionally parental discord, separation, or divorce may occur. Assessing for family functioning, postpartum depression, and confidence in performing the infant’s cares at home are important components of the medical home. If available, the medical home care coordinator or social worker and the local Early Intervention Part C Program may provide additional support to the family.

Why is “Tummy Time” or the prone position so important for my infant?

Since the 1994 “Back to Sleep” campaign was initiated in the United States, sudden infant death syndrome (SIDS) has dropped by more than 50%. But the other part of this campaign is the “Tummy to Play” campaign. This was initiated because infants were not placed in the prone position often enough to develop vital motor skills associated with this position. This also occurs with the recent development of infant car seats, carriers, and swings that limit tummy time.
The prone position or “Tummy Time” is important for an infant’s motor development to strengthen and develop motor control associated with their head, neck, shoulder girdle, and back musculature to prepare them for subsequent motor milestones; e.g., pushing up on palms of hands, rolling, crawling, sitting and eventually pulling to stand. It is a position that helps form a round head versus a possible flat portion of the skull (plagiocephaly) when too many hours are spent on their back or in the supine position. It is a position that helps to build this musculature previously described to avoid asymmetries of the neck known as torticollis. Finally, prone is a position that helps the infant problem solve and develop balance reactions that are vital when moving toward participating in upright positions and postures.
"Tummy Time” should be performed by infants when they are awake, alert, and in a state that indicates they are ready to play. It is a position in which the infant becomes stronger and can evolve toward independent mobility. It is a position that should be practiced in multiple short durations throughout their day to become familiar and stronger with the position. It is a time for play. When the infant becomes fatigued, gently roll the child to a supine position and once the child recovers, return to the tummy for another session of play. The goal is to gradually increase the amount of time that the infant is able to tolerate “Tummy Time” play.
For more ideas associated with prone play, see Tummy Time Tools (PDF Document 1.8 MB).

What is ROP and what screening is necessary?

Retinopathy of prematurity (ROP) is caused by abnormal growth of the blood vessels in the eyes of premature infants. Early screening is done since timely laser treatment can decrease the risk of blindness from ROP by about 50%. Screening exams and photographs are used to detect the disease when it is just bad enough to warrant treatment. Early treatment will help your baby get the best possible outcome. Parents often wonder if the eye examinations hurt. The combination of anesthetic eye drops and dextrose solution, used by the nursing staff, help decrease any discomfort associated with the instruments used for examination and for photographs. Follow up after discharge from the NICU is necessary since ROP is often still present at the time of discharge. Careful follow up, based on the current stage, location, and severity of disease, is essential to get the best outcome. Having ROP does increase risk of nearsightedness (myopia), which may require glasses. The decision about putting an infant in glasses is different than in a school age child. Infants are put into glasses if the degree of blurring from the myopia would interfere with overall development.

How long should my infant be on breast milk or formula?

Premature infants should be on formula for 12 months adjusted age. Exclusive breast-feeding is recommended for the first 6 months of a baby’s life followed by breastfeeding in conjunction with the introduction of solid foods until at least 12 months of age. Breast-feeding can be continued per the recommendations from the American Academy of Pediatrics (AAP) for as long as mutually desired by mother and baby.

How long does my infant need to be on NeoSure (or EnfaCare)?

Infants should be on NeoSure or EnfaCare a minimum until 9 months chronological age; 12 months chronological age is preferred (and then a standard infant formula can be used from that point until 12 months adjusted age). Some caregivers do these at adjusted ages, with NeoSure continued until a minimum of 9 months adjusted age. If growth at that visit is good, then transition to standard formula until 12 months corrected age; if growth is only fair at that visit, then continue NeoSure until 12 months adjusted age.

My child is doing well after her stay in the NICU. Why do we have to keep coming? Can’t my family practitioner do the evaluation?

As the child gets older, language, cognitive, and emotional and behavioral skills are increasingly complex and the evaluations take an increasing amount of time to perform. Physicians often do not have the time or training to do these evaluations.

Resources

Information & Support

Where can I go for further information?

For Parents and Patients

Support

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.

General

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.

State Part C Early Intervention Coordinators
Lists state contacts for Early Intervention (Part C) agencies offered by the National Early Childhood Technical Assistance Center (ECTA Center).

Baby Watch Early Intervention Locations (UDOH)
Baby Watch locations throughout Utah providing early intervention programs; Utah Department of Health.

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.

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.

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.

Patient Education

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.

Services

Audiology

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Behavioral Programs

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Developmental Evaluation

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Developmental Pediatrics

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Early Intervention Programs

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Family Support, General

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Head Start/Early Head Start

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Neonatal Follow-up Programs

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Nutrition/Dietary

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Occupational Therapy, Pediatric

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Pediatric Cardiology

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Pediatric Cardiothoracic Surgery

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Pediatric Dentistry

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Pediatric Gastroenterology

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Pediatric Genetics

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Pediatric Nephrology

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Pediatric Neurology

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Pediatric Neurosurgery

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Pediatric Physical Medicine & Rehab

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Pediatric Plastic Surgery

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Pediatric Pulmonology

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Pediatric Urology

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Physical Therapy

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Pregnancy-related, Other

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Preschool/Early Childhood Education

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Psychiatrist, Child-18

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Psychologist, Child-18

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Respiratory Therapy

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School Districts

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Schools for the Deaf & Blind

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Speech/Language Therapy

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

Authors

Reviewing Author: Sarah Winter, MD - 12/2014
Content Last Updated: 12/2015

Funding/Support

The Medical Home Portal thanks the Neonatal Follow-up Clinic team at the Utah Bureau of Children with Special Health Care Needs for compiling many of the questions.

Page Bibliography

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

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

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

Moreno K.
Toilet Training Made Semi-Easy.
the Down Syndrome: Health Issues site; (1996) http://www.ds-health.com/train.htm. Accessed on 02/22/05.
Offers toilet training suggestions specific for children with Down syndrome.