Premature Infant Follow-Up

Introduction

The Questions and Answers that follow aim to provide an introduction to premature infant follow-up for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.
Note that we use the term doctor to refer to physicians, nurse practitioners, physician assistants, and other licensed clinicians who may care for your child.
More information about many topics relevant to children who need premature infant follow-up and with many other chronic conditions and their families can be found in the left menu. Detailed information aimed at primary care doctors can be found in our Premature Infant Follow-Up module.

What is prematurity?

Premature babies are those born before 37 weeks of gestation. Extreme prematurity describes babies born before 26 weeks gestation. The earlier in gestation a baby is born, the more likely other conditions involving the lungs, intestines, brain, and other organs will occur.

What causes prematurity?

Many factors are linked to premature births and early labor, such as having twins/multiple births, prior early births, some infections, some chronic conditions, and others. With the advancement 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?

The most common symptom will be difficulty breathing because of immature lungs. However, a variety of other conditions commonly develop in premature babies after they are born. The symptoms of those conditions will vary based on age of gestation and other factors.

How is it diagnosed?

Premature babies are those born before 37 weeks of gestation. The diagnoses of the conditions that are common in premature babies varies by the condition.

What is the expected outcome?

Survival of children born very prematurely has improved greatly over the past four decades, but long-term outcomes vary. Some children do very well while others require prolonged intensive care and may have persistent problems. Complications can happen after birth or may show later 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 12-15% of children born at less than 26 weeks will have cerebral palsy [Mikkola: 2005], [Hintz: 2011], and roughly 50% will have significant intellectual disability (IQ <70). [Moreno: 1996] The percentage of babies with extreme prematurity who end up without significant complications is not certain.

What is the risk for future babies?

An important step in neonatal follow-up is to determine the mother’s risk for 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 themselves at greater risk of giving birth prematurely. [Institute: 2007]

What is the treatment?

The treatment of conditions that are common in prematurity varies. 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), though much of the information will also apply to preterm babies born later in gestation. Babies born preterm may develop conditions such as bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), intraventricular hemorrhage (IVH), hypoxic-ischemic encephalopathy (HIE), necrotizing enterocolitis (NEC), and others. Those babies will need follow-up through their original due date 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 doctor will sometimes need to manage supplemental oxygen, feedings through gastrostomy (G-tube) or jejunostomy tubes, specialized immunizations, and specialized formulas, as well as coordinate the care of multiple subspecialists and/or developmental therapists.

How will will my family’s life be changed?

Having a baby hospitalized after birth is a stressful experience for families. However, despite the long-awaited arrival in the home, stress can increase for caregivers after discharge from the NICU. Families sometimes feel very attached to, or dependent on, the NICU care team. They may feel alone or fear that they are unable to give proper care for the baby at home. This stress can put mothers at increased risk of postpartum depression and sometimes the stress can affect how families and marriages function. Assessing for family functioning, postpartum depression, and confidence in taking care of 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” or the prone position so important for my baby?

Since the 1994 “Back to Sleep” campaign started in the United States, sudden infant death syndrome (SIDS) has dropped by more than 50%. The other part of the campaign is “Tummy to Play.” This began to assure that babies were placed in the prone position enough to develop vital motor skills. Increasing use of infant car seats, carriers, and swings also limit tummy time.
Spending time in the prone position (Tummy Time) is important for a baby’s muscle development and coordination. This helps them achieve developmental milestones such as pushing up on palms of 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 laying on the back. It can also help prevent 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 seem ready to play. When the baby becomes tired, roll him/her to a supine position (on their back) and return to the tummy when they seem ready. The goal is to gradually increase the amount of time that the baby tolerates “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 babies. Early screening is done because timely laser treatment decreases the risk of blindness from ROP by about 50%. Screening exams and photographs are used to 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 discomforts. Follow-up after discharge from the NICU is needed since ROP is often still present. Careful follow up, based on the stage, location, and severity of disease, is 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.

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 breast-feeding 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. Breast-feeding can be continued for as long as mutually desired by mother and baby.

How long does my baby need to be on a special formula?

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.

My child is doing well after her stay in the NICU. Why do we have to keep coming to follow-up care? Can’t my family doctor do the needed evaluations?

As your child gets older, language, cognitive, and emotional and behavioral skills become more complex and the evaluations take more time to perform. Primary care doctors often do not 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, you need to 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

Where can I go for further information?

For Parents and Patients

Support

National Center for Hearing Assessment and Management (NCHAM)
Extensive compilation of resources and support for families with a child who is deaf or hard of hearing.

General

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).

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)
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.

Center for Parent Information & Resources Locator
Parent Centers provide education and referrals for families with a child who has a disability, as well as the professionals who work with them. Each state has a parent center.

Utah Parent Center
A nonprofit 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 for Patients & Families in Utah (UT)

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.

Authors & Reviewers

Initial publication: October 2014; last update/revision: November 2020
Current Authors and Reviewers:
Senior Author: Jennifer Goldman-Luthy, MD, MRP, FAAP
Reviewers: Christine Evans
Tina Persels
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
2014: first version: Sarah Winter, MDR
AAuthor; CAContributing Author; SASenior Author; RReviewer

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.

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.