Premature Infant Follow-Up (FAQ)
- What is prematurity?
- What causes prematurity?
- What are the symptoms?
- How is it diagnosed?
- What is the expected outcome?
- What is the risk for future babies?
- What is the treatment?
- How will my family’s life be changed?
- Why is “Tummy Time” so important?
- What is ROP screening?
- How long should my baby be on breast milk or formula?
- My child is doing well after the NICU, so why do we keep coming to follow-up care?
- What is my baby’s adjusted age?
- Resources
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.
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?
What is ROP screening?
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) ( 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) ( 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
Author: | Sarah Winter, MD |
2020: update: Christine EvansR; Tina PerselsR |
2015: update: Jennifer Goldman, MD, MRP, FAAPSA |
2014: first version: Sarah Winter, MDR |
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.