Are You Prepared for a Preemie?

A Guide to Preterm Babies By Gwen Morrison

When a baby is born prematurely, or at a low birth weight, there may be developmental delays that are not seen in the early days of infancy. Often it is within the first few years that these delays, or other problems, are discovered.

Playing Catch-up
"Children who are at increased risk for developmental problems include those born very prematurely or at very low birth weight," says Sheena Carter, Ph.D., a developmental psychologist at Emory School of Medicine in Atlanta, Ga. “While most prematurely born children develop beyond any problems associated with their early experiences, frequently there are developmental issues that need to be addressed as early as possible in order to prevent further complications”

Carter is part of a multidisciplinary team which provides developmental follow-up services to high-risk children served by the Emory Regional Perinatal Center. Carter stresses that periodic re-evaluation is important during infancy and early childhood, as most developmental difficulties emerge slowly over time.

According to Carter, "catch-up" refers to a more-rapid-than-typical growth to make up for the earlier loss in growth velocity. She says it does happen, typically for head growth shortly after term age and frequently for height in the preschool period, and sometimes as late as adolescence for height and weight. Not all children experience this catch-up, and some will always be small.

“Some of the variables that influence the potential for catch-up growth include size for gestational age at birth, genetic growth potential, nutritional factors and neurological injury,” says Carter. “It is not possible to accurately predict the later growth of an individual child.”

Jennifer Pinto-Martin is a nursing professor at the University of Pennsylvania who received a bachelor’s degree in human biology from Stanford University in 1978 and a Ph.D. in epidemiology from the University of California at Berkeley in 1984. She has been involved in the Neonatal Brain Hemorrhage Study, which is the largest regional study of premature babies. These babies have been studied for 14 years.

“While many babies born prematurely do very well in terms of growth and development, many have physical and psychological problems that emerge as the child grows up,” says Pinto-Martin. “We have found that poor school performance and the need for special education is not always recognized when the child first enters school, but may be more apparent by third or fourth grade.”

Gaining Ground
Kim Wilson from Hamilton, N.J., co-author of Living Miracles: Stories of Hope From Parents of Premature Babies (St. Martin's Press, 2000), offers this advice to parents: "As your preemie grows older, be aware of their speech and pronunciation and their progress or lack of. When my son was 6 years old he tested on a 3-year-old level."

Wilson’s son was born two months premature, but weighed an astonishing 5 pounds, 7 ounces. At 8 years old, he had caught up with peers and is still currently on target. He attended speech therapy a few times a week and was tested from one to three times per year.

Dorothy Phelan from Ontario, Canada remembers the worry that came with her tiny bundle of joy in May of 1973. “She had such a tiny stomach, she was up every hour,” says Phelan. “She walked late and she had a terrible time with her teeth. The doctors told me her jaws weren’t completely developed when she was born. She later needed extensive work done on her teeth, including plates and braces. We discovered when she was 4 years old that her vision was underdeveloped at birth. She ended up wearing bifocals to correct the vision problem.”

Phelan recalls that her daughter was always underweight, even in later childhood years. “She just didn’t eat,” says Phelan. “As she got older, she was plagued with bowel and urinary tract problems that doctors have linked to her premature birth.”

Carey Vlardi of Burlingame, Calif., gave birth 17 weeks early to her son in 1997. “He didn’t sit up until he was about 9 months old and walked at 19 months," says Vlardi. "His fine motor skills are also delayed. He also has sensory integration dysfunction, which I am sure is associated with the prematurity. He doesn’t like to hold a pencil and he can’t write yet.”

Pinto-Martin reminds parents that all children who are born prematurely, even those who were not so small at birth, weighing between 1,500 and 2,000 grams, must be followed carefully to ensure that problems are recognized as soon as possible.

Following Progress
With high-risk children, it is appropriate to use in-depth screening and evaluation. The tests used routinely on the general population should not be relied on to gather accurate information for high-risk developmental problems. The follow-up for high-risk infants should involve periodic screening for sensory impairment, developmental delays and any other condition for which the child may be considered at increased risk.

The follow-up should ultimately involve close evaluation of the medical, psychological and social factors in addition to assessment of the child’s developmental progress.

“Be aware that paperwork and referral systems in your state may be a long, tedious process,” says Wilson, remembering the struggles when getting help for her son at an early age. “Whatever you do, don’t give up. If you believe your child may have a speech delay, keep making those phone calls.”

It is important to remember that each child is unique in his or her growth and development. Developmental follow-up includes having ongoing communication with your doctors to ensure that your child receives the care he needs as early as possible. Early intervention could make all the difference in future development.

Want to see more?

• Your Preemie’s First Year
• Decoding Your Preemie’s Signals
• Magical Melodies: The Benefits of Music for You and Your Preterm Infant
• Newborn Cord Care: Caring and Cleaning for Your Baby's Umbilicus
• I Wish Someone Had Told Me What I Needed to Know About Bedrest
• Talk about it!