Follow-Up Corner: Special Program for Parents of Preterm Infants

Published on in Neonatology Update

A special program for parents of preterm infants

“How old is my baby?” was the heartfelt query of one puzzled mother as she brought her son to his first follow-up visit. Indeed, one of the more confusing concepts for new parents of a preterm baby is the difference between chronologic age and “adjusted” or “corrected” age, and understanding why this should matter to parents.

What is the difference?

The chronologic age of a baby is the number of days, weeks, or months from the time of the baby’s birth. A baby born at term three months ago will have a chronologic age of 3 months. On the other hand, if the baby was three months preterm, at the chronologic age of 3 months the baby will just be approaching the size and developmental skills of a term baby. The corrected or adjusted age of that baby will be “just born” or 0 months of age.

Why does this matter?

Most parents, relatives, and neighbors of a preterm baby expect the baby to grow and develop according to their chronologic age. Thus, for our example above, they would expect the baby born three months preterm to weigh approximately 13 pounds and to exhibit developmental milestones of a 3-month-old, e.g., follow faces, smile, coo, have good head control, and perhaps have started to roll over. These are not milestones expected of a newborn. While usually well-meaning, acquaintances may suggest to parents of a preterm infant that their baby is delayed and behind developmentally. These are words that can cause anxiety for parents who already have experienced the stress of having delivered a preterm infant.

The "I’m a Special Baby" program being piloted by Children’s Hospital of Philadelphia’s Division of Neonatology in the Hospital of the University of Pennsylvania Intensive Care Nursery seeks to educate parents regarding chronologic vs. adjusted age, early developmental milestones, and strategies to encourage development prior to an infant’s discharge. In a 20-minute session, conducted with pictures and informational material given to the family at the end of the session, a member of the caregiver team sits with parents at the baby’s bedside to discuss these concepts.

The session begins by inquiring whether the parents feel knowledgeable regarding infant development and proceeds from there depending on parents’ responses. A significant portion of time is spent discussing the often confusing concepts regarding the baby’s age and developmental expectations related to adjusted age. A demonstration of normal neonatal reflexes follows, often with the parent’s own baby, pointing out when these reflexes are likely to disappear. Developmental milestones for the first several months are discussed in detail. The final portion of the discussion details how to encourage infant development: the importance of reading, even to a newborn; the easy and inexpensive interactions of singing and “talking through your day” with a baby; and the concept that many household items, not expensive toys, may be used to encourage development.

Parents are cautioned to avoid using television, phones, or videos as “babysitters” and teachers. The final discussion point emphasizes the importance of developmental follow-up by the Neonatal Follow-Up Program, located at CHOP’s Buerger Center for Advanced Pediatric Care.

While we are optimistic regarding the outcome of preterm infants, it is well-established that babies born prematurely are at risk for developmental issues. Therefore, preterm infants are referred to Early Intervention, parents are oriented to developmental care through the I’m a Special Baby program, and the first appointment at the Buerger Center is scheduled before the baby is discharged from the hospital. This multifaceted approach ensures that families and high-risk babies are provided as many opportunities as possible to receive high-quality early developmental care.

How has it been received?

Of the 30 parents who have participated in I’m a Special Baby to date, all have enthusiastically endorsed the program. All have felt their knowledge of preterm infant development increased, that the program offers valuable insights, and that it should be conducted with all parents prior to a preterm baby’s discharge.

Success was best expressed by a young mother who arrived at her first follow-up visit with twin girls born at 28 weeks gestation, each still requiring feeding via nasogastric tubes. Upon clinic arrival and seeing one of her ICN caregivers she exclaimed, “Remember what you told me? When I got the girls home everyone was saying they didn’t look like 4-month-olds, and they weren’t doing the stuff they should be. And I said, ‘They aren’t 4-month-olds, they are 2-month-olds!”

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