Premature Infant Follow-Up (FAQ)

Answers to questions about care of premature infants

What is prematurity?

Babies born before 37 weeks of gestation are premature. Babies born before 26 weeks gestation are considered extremely premature. The earlier a baby is born, the more likely there will be issues with the lungs, intestines, brain, and other organs.

What causes prematurity?

Being pregnant with more than 1 baby, prior early births, infections, and some chronic conditions are some of the many reasons premature births and early labor can happen.

What are the symptoms?

Difficulty breathing because of immature lungs is common. Other conditions can develop in premature babies after birth, depending on the age of gestation and other factors.

How is it diagnosed?

Premature babies are those born before 37 weeks of gestation.

What is the expected outcome?

Improved NICU care and use of prenatal steroids, surfactants, CPAP, and neurodevelopmental care techniques have helped more babies survive premature births. Some f these babies do very well, while others require prolonged intensive care and may have persistent problems. Complications can happen after birth or may show as chronic disabilities, such as cerebral palsy, learning problems, vision and hearing impairment, feeding disorders, heart or lung conditions, and/or behavioral disabilities. Research finds that 8% of children born at less than 26 weeks will have moderate to severe cerebral palsy, 50% will have significant intellectual disability (IQ <70), and about 49% of babies have no or mild neurodevelopmental impairment. [Bell: 2022] [Novak: 2013]

What is the risk for future babies?

An important step in neonatal follow-up is determining the mother’s risk of having another premature baby. A medical and pregnancy history is key in doing so. For families who want more children, referral to obstetric experts (maternal-fetal medicine) will help the mother plan for a safe delivery. Mothers who were born prematurely are at greater risk of giving birth prematurely. [Institute: 2007]

What is the treatment?

Treatment depends on the conditions that develop. Children and their families often benefit from specialized follow-up services to detect and address developmental delays, feeding difficulties, growth problems, vision impairment, hearing loss, and cerebral palsy (CP). The medical home and primary care doctor will sometimes need to manage supplemental oxygen, feedings through gastrostomy (G-tube) or jejunostomy tubes, specialized immunizations, and special formula, as well as coordinate the care of multiple subspecialists and/or developmental therapists.

The Premature Infant Follow-Up module addresses the care of babies born at extremely low gestational ages and weights, typically at or less than 26 weeks and/or 1500 grams (about 3 pounds). However, much of the information will also apply to preterm babies born later in gestation.

How will my family’s life be changed?

A baby hospitalized after birth is stressful for families. However, despite the long-awaited arrival in the home, caregiver stress can increase after discharge from the NICU. Families can feel very attached to, or dependent on, the NICU care team. They may feel alone or fear that they cannot properly care for the baby at home. This stress can put mothers at increased risk of postpartum depression. It can affect the entire family and marriage. Assessing for family functioning, postpartum depression (Postpartum Depression Screening), and confidence in caring for the baby 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.

Finding support within the special needs community can be helpful for families. This can be through a doctor’s office, social media platform, or by calling your local Parent Center. See the Resources section below for more information.

Why is “Tummy Time” so important?

Since the 1994 “Back to Sleep” campaign started in the United States, sudden infant death syndrome (SIDS) has dropped by more than 50%. The use of infant car seats, carriers, and swings also limits tummy time. However, the other part of the campaign is “Tummy to Play.” Spending time in the prone position (Tummy Time) is important for a baby’s muscle development and coordination. It helps with developmental milestones, such as pushing up with hands, rolling, crawling, sitting, and eventually pulling to stand.
Tummy Time may also help prevent flattening the back of the skull, which can occur if too much time is spent lying on the back. It can prevent the tightening of neck muscles that results in torticollis (difficulty turning the head to one side). The prone position may also help babies learn to problem solve and develop balance reactions that are key when learning to sit and stand.
Babies should have "Tummy Time” for several short periods per day when they are awake, alert, and ready to play. When the baby becomes tired, roll them on their back and return to the tummy when they seem ready. The goal is to gradually increase the amount of “Tummy Time” play. For more ideas associated with prone play, see

What is ROP screening?

Retinopathy of prematurity (ROP) is caused by abnormal growth of the blood vessels in the eyes of premature babies. Early screening is done because timely laser treatment decreases the risk of blindness from ROP by about 50%. Screening exams and photographs help detect the disease before it needs treatment.
Parents often wonder if the eye examinations hurt. The use of anesthetic eye drops and sugar water by mouth by nursing staff helps decrease any discomfort. Follow-up after discharge from the NICU is needed since ROP often is still present. Further follow-up, based on the stage, location, and severity of disease, can be essential. Having ROP increases the risk of nearsightedness (myopia), which may require glasses. Babies are prescribed glasses only if the degree of blurring from myopia would interfere with overall development. See Premature Infant and Retinopathy of Prematurity.

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

Premature babies should be on breast milk or formula for 12 months adjusted age. Exclusive breastfeeding is recommended for the first 6 months of a baby’s life, followed by breastfeeding plus solid foods until at least 12 months of age. Breastfeeding can be continued for as long as mutually desired by mother and baby.

Premature babies who are not on breast milk should be on a special formula (like NeoSure or EnfaCare) until at least 9 months of age (12 months is preferred) and then a standard infant formula until 12 months adjusted age). Some caregivers use adjusted ages, continuing the special formula until at least 9 months adjusted age. If growth at that visit is good, standard formula is used until 12 months adjusted age; if growth is only fair at that visit, the special formula is continued until 12 months adjusted age. See Formulas & Fortifiers for Premature & Low Birth Weight Infants and Affording Formula.

My child is doing well after the NICU, so why do we keep coming to follow-up care?

As your child gets older, language, cognitive, emotional, and behavioral skills become more complex. The evaluations take more time to perform. Primary care doctors do not necessarily have the time or training to do these evaluations.

What is my baby’s adjusted age?

To understand where your baby should be with developmental milestones in the first few years, adjust their age for prematurity. An easy formula for adjusted age is: subtract the number of months your baby was born early from your baby’s current age. For example, if your baby is 6 months old and was born 3 months early, the adjusted age is 3 months (6 months minus 3 months). We adjust for prematurity until babies are 18 to 24 months old.
A: Your baby is __________ months old right now.
B: Your baby arrived ___________ months early.
A – B = ____________ months. This is your baby’s adjusted age.

Resources

Information & Support

Related Portal Content
Premature Infant Follow-Up
Assessment and management information for the primary care clinician caring for the child who needs premature infant follow-up.
Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.

Answers to questions about specific conditions can be found at:

For Parents and Patients

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

Preemie Milestones (AAP) (PDF Document 824 KB)
Helps parents understand important developmental milestones to watch for at each age and how to determine which milestones to use for preemies; 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 and is an easy way to locate the person in charge of your state’s Early Intervention programs; National Early Childhood Technical Assistance Center (ECTA Center).

Learn the Signs. Act Early. Autism (CDC)
Fact sheets, growth charts, and posters 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.

Find Your Parent Center
Parent Centers provide education and referrals for families with a child who has a disability, as well as the professionals who work with them. There are almost 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US states and Territories; Center for Parent Information & Resources.

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.

Studies

Clinical Trials for Preterm Infants (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Authors & Reviewers

Initial publication: October 2014; last update/revision: June 2023
Current Authors and Reviewers:
Author: Sarah Winter, MD
Funding: 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.
Authoring history
2020: update: Christine EvansR; Tina PerselsR
2015: update: Jennifer Goldman, MD, MRP, FAAPSA
2014: first version: Sarah Winter, MDR
AAuthor; CAContributing Author; SASenior Author; RReviewer

Page Bibliography

Bell EF, Hintz SR, Hansen NI, Bann CM, Wyckoff MH, DeMauro SB, Walsh MC, Vohr BR, Stoll BJ, Carlo WA, Van Meurs KP, Rysavy MA, Patel RM, Merhar SL, Sánchez PJ, Laptook AR, Hibbs AM, Cotten CM, D'Angio CT, Winter S, Fuller J, Das A.
Mortality, In-Hospital Morbidity, Care Practices, and 2-Year Outcomes for Extremely Preterm Infants in the US, 2013-2018.
JAMA. 2022;327(3):248-263. 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.

Novak I, McIntyre S, Morgan C, Campbell L, Dark L, Morton N, Stumbles E, Wilson SA, Goldsmith S.
A systematic review of interventions for children with cerebral palsy: state of the evidence.
Dev Med Child Neurol. 2013;55(10):885-910. PubMed abstract / Full Text
Describes systematically the best available intervention evidence for children with cerebral palsy.