Whether adopting domestically or from abroad, it’s common to encounter a situation where a child referred to you for adoption was born prematurely (premie or preemie) or at a low birth weight (LBW). Globally, 11.1% of all newborns are born prematurely1 and the figure is likely higher in international adoptees due to the prevalence of factors that increase the rate of prematurity such as lack of prenatal care and poor nutrition. Adoptive parents are justifiably concerned about whether premature delivery or LBW will be associated with special medical and/or developmental problems.
Gestational Age (weeks since the birth mother’s last menstrual period)
- Term Infant—born between 37 and 42 weeks of pregnancy
- Late Preterm Infant—born between 34 and 36 weeks and 6 days of pregnancy.
- Very Preterm Infant—born at less than 32 weeks gestation
- Extremely Preterm Infant—born at less than 25 weeks gestation
Premature Infant—A full-term pregnancy, measured in weeks after the birth mother’s last menstrual period, is defined as between 37 and 42 completed weeks. Therefore, a premature infant is any child born prior to 37 completed weeks of pregnancy.
- Low Birth Weight—birth weight less than 5 pounds, 8 ounces (2,500 grams). Many countries placing children for international adoption lack the resources to accurately determine gestational age and use birth weight as an indicator of prematurity and thus, LBW typically corresponds to the late preterm and some of the very preterm children, or children with growth restriction prior to birth.
- Very Low Birth Weight—birth weight less than 3 pounds 5 ounces (1,500 grams). These children are typically (but not always) very preterm infants.
- Extremely Low Birth Weight Infant— a birth weight less than 2 pounds 3 oz (1000 g). While theoretically possible, most countries participating in international adoption lack the resources to support these medically fragile children at birth and thus, we see very few children in this medical category.
- Intrauterine Growth Restricted (IUGR)—Another category of LBW infants are those born less than 90% of normal birth weight compared to other babies at the same gestational age. Western nations and Korea are able to reasonably estimate IUGR. These infants can be healthy but their growth was slowed due to potential maternal (malnutrition, hypertension) or fetal factors (prenatal exposure to drugs/alcohol or infections) and thus, they can have mildly increased risks for future growth and developmental problems.2
- For the sake of simplicity and due to the lack of accurate diagnostics in many countries in adoption, for this article the term premie refers to all of the above groups.
Medical Problems in Premies
A wide variety of problems afflict preterm/LBW infants in the immediate period after birth. However, by the time you receive your referral, many of these issues will have resolved. More important will be the potential future issues to consider.
The long-term outcomes of premies are dependent on several factors. A good rule of thumb is that the earlier in gestation or smaller a baby is, the lower the chances of survival and the higher chances of ongoing medical and developmental problems. Outcome also depends on how ill the child is after birth and the level of medical care available, which depends on the sophistication of the medical system available where the child was born. Finally, while many premature infants delivered prior to 30 weeks gestation will have immature lungs and need respiratory support to survive, some will have mature lungs that function normally due to maternal factors, e.g. stress.
What do we know about outcome?
Very low birth weight (VLBW) or very preterm infants have the highest risk of adverse outcomes. A recent analysis of multiple outcome studies concluded that these children were at risk for moderate to severe deficits in academic achievement (math, reading and spelling), a higher risk for attention problems, internalizing behavior problems (depression, anxiety) as well as deficits in executive function.3 Additional problems include cerebral palsy, persistent lung problems such as asthma as well as hearing and vision loss. For late preterm infants (and usually in the LBW category), which make up the majority of premature births (75%), outcomes are usually quite good, however recent work has identified a slightly increased risk (~20%) over full-term infants for many of the same long term, but usually milder issues that affect very low birth weight/very preterm infants.4
Determining the likely developmental outcome of an individual child early in life is very difficult as the central nervous system is very immature and developmental milestones are few and nonspecific.5 Some correction for prematurity is commonly used up to 24 months to determine adjusted growth and development. The younger the baby, the more difficult it becomes to predict outcome. If a child is making good progress in acquiring important developmental milestones during the first 12-24 months, growth is normal and hearing and vision unimpaired, we can be fairly optimistic that outcome will be favorable. However, even at this stage, we must often wait until school age to detect more subtle problems in learning, cognition, attention and behavior. Monitoring will also continue through life for growth (shorter stature as an adult), subtle abnormalities in lung function and a possible higher risk of chronic diseases such as hypertension (high blood pressure).6
In the context of limited medical information, what might be some warning signs for LBW/VLBW children? Sequential measurements are important with compromised 2length and head circumference being the most important risk factors. Severe developmental delay is also a warning sign. Severe delays are a red flag and may indicate cerebral palsy or other neuromotor problem. Failure to show a social smile may indicate blindness and failure to babble by 12 months may indicate hearing problems. Unfortunately, in addition to prematurity, severe neglect within orphanages will also adversely influence development and growth. Therefore, it’s important to receive knowledgeable advice ideally from specialists in adoption medicine.
Outcomes within the Family Context
Despite these possible risks, there is great room for optimism. Even though many medical, social and developmental disabilities persist through adolescence, former premies as youth and young adults rate their quality of life comparable to normal birth weight peers.7 In addition, the environment in which a premie develops is an enormously important factor in outcome. Among premies, the most significant factors in school outcome were parent education, child rearing by 2 parents (regardless of marital status), and stability in geographic residence and family composition over 10 year.8,9
Finally, the Minnesota International Adoption Project surveyed over 1800 families whose children had been in residence for an average of 7 years. When asked how the adopted child’s medical and/or behavioral problems affected the family, parents of low birth weight infants were no more likely than parents of the other children to report they were struggling to adjust. (unpublished data)
Parents considering adopting a premature/LBW infant should take the same approach to decision making as any family considering a specials needs adoption. Important considerations include:
- Do I have adequate information and time to make an informed decision? Attempt to gather all information and solicit appropriate consultation to be able to make a well-reasoned decision.
- Do I have the personal, financial, health care and relational resources as well as the desire to provide the care needed to enable my child to develop to his or her full potential? Every child and every family is different. A given child may fit well into one family but severely stress another.
- Do I have appropriate expectations? Remember that an expectation minus reality equals disappointment. The earlier, smaller, and sicker a baby was at birth, the greater the likelihood of long-term issues.
- What resources are in the community if my child has a problem? Identify medical and psychological resources in your community. Contact your local school system to investigate free early intervention services for which your child may qualify.
If you envision the possibilities and feel confident you can accept the challenges, by all means proceed with the adoption. If you find yourself hesitating, gather more information about the conditions that may affect your child and talk to parents who have parented premies. Finally, be willing to say no if you don’t feel comfortable about your abilities to provide the care needed to help a specific child thrive.
In summary, while there is clearly increased risk of ongoing medical, developmental and behavioral problems in premies, most experience normal growth and development. If a family sets appropriate expectations, knows their own abilities and the resources available, seeks appropriate consultation and is cognizant of a child’s potential challenges, they will not only provide a family for a child but also will likely enjoy the customary spectrum of parenting joys.
- Premature and LBW/VLBW children are referred from all countries
- There can be increased risks of ongoing medical, developmental and behavioral problems in premature children depending on how premature or how small at birth
- If a family sets appropriate expectations, knows their own abilities and the resources available, seeks appropriate consultation and is cognizant of a child’s potential challenges, they will not only provide a family for a child but also will likely enjoy the customary spectrum of parenting joys.
- Blencowe H, Cousens S, Oestergaard MZ, et al. National, regional, and worldwide estimates of preterm birth rates in the year 2010 with time trends since 1990 for selected countries: a systematic analysis and implications. The Lancet. 2012;379(9832):2162-2172.
- Guellec I, Lapillonne A, Renolleau S, et al. Neurologic outcomes at school age in very preterm infants born with severe or mild growth restriction. Pediatrics. 2011;127(4):e883-e891.
- Aarnoudse-Moens CSH, Weisglas-Kuperus N, van Goudoever JB, Oosterlaan J. Meta-analysis of neurobehavioral outcomes in very preterm and/or very low birth weight children. Pediatrics. 2009;124(2):717-728.
- Arpino C, Compagnone E, Montanaro ML, et al. Preterm birth and neurodevelopmental outcome: a review. Child's Nervous System. 2010;26(9):1139-1149.
- Latal B. Prediction of neurodevelopmental outcome after preterm birth. Pediatr Neurol. 2009;40(6):413-419.
- Odberg MD, Sommerfelt K, Markestad T, Elgen IB. Growth and somatic health until adulthood of low birthweight children. Archives of Disease in Childhood-Fetal and Neonatal Edition. 2010;95(3):F201-F205.
- Zwicker JG, Harris SR. Quality of life of formerly preterm and very low birth weight infants from preschool age to adulthood: A systematic review. Pediatrics. 2008;121(2):e366-e376.
- Potharst Evas, Houtzager Ba, Van Sonderen L, et al. Prediction of cognitive abilities at the age of 5 years using developmental follow‐up assessments at the age of 2 and 3 years in very preterm children. Developmental Medicine & Child Neurology. 2012.
- Gross SJ, Mettelman BB, Dye TD, Slagle TA. Impact of family structure and stability on academic outcome in preterm children at 10 years of age. J Pediatr. 2001;138(2):169-175.
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Dana E. Johnson, MD, PhD
Professor of Pediatrics
Divisions of Neonatology and Global Pediatrics
Co-Founder, Adoption Medicine Clinic
University of Minnesota