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WRTG 150H March 30, 2012 Fragile Life: Effects of Preterm Birth and Early Intervention Programs Four years ago, the phone rang during dinner. On the other end of the line was my cousin telling us that her water had broken only halfway through her pregnancy, and so we left dinner on the table and drove more than an hour to the hospital to see her. My cousin has always been like an extra daughter in our family. The two of us had a running joke that she would one day name a child after me, but only “after me” because the baby would get a name later than I did. It came as a surprise and an honor when at the hospital, she told me that she and her husband had decided to name their little girl Laurie. Despite doctors’ efforts and a month of bed rest, my cousin contracted an infection and was forced to deliver little Laurie at 24 weeks gestation. Laurie wasn’t expected to survive for more than a few hours, but she survived the dangerous trip from the University of Utah Hospital to Primary Children’s Hospital, and then she survived the night, and then she kept surviving one more day at a time. Four years later, she is not just surviving, but she is a cheerful, energetic young girl who makes everyone around her happy, especially me. As I have watched my namesake fight for her life and win, I have also wondered about the challenges she is likely to face in the future. She doing better than anyone ever expected, but she will still face serious medical and perhaps emotional and social issues in the future. What exactly are these obstacles might she encounter? And what are we as a society doing to help Laurie and other children like her?

Through my research, I have found that children who are born preterm are much more likely than their peers to experience a myriad of physical, social, and emotional difficulties, and their parents are often susceptible to stress and depression. However, there are early intervention programs offering support for both infants and their parents during these difficult times. Although some researchers do not believe that these early intervention programs help, there is much more research showing that these programs do in fact help mothers adjust and children get off to a better start, which may lead to reducing future challenges related to children’s preterm birth. Effects of Preterm Birth Preterm birth is generally defined as the birth of a child before it has reached 37 weeks gestational age. The later a child is born, the more likely it is to survive. Babies born toward the beginning of the preterm range generally experience more severe disabilities, medical complications, and developmental delays (“Childhood disease�). Children born preterm are at risk for a wide variety of developmental difficulties, and these difficulties tend to be more severe if the child is born earlier. In a wide-ranging review of research on educational difficulties of preterm children, Garry Hornby and Lianne Woodward, professors at the University of Canterbury, summarized some of the possible developmental repercussions of preterm birth. They estimate that almost half of such children had a health condition that limited daily activities, as compared to 17% of their full-term peers (Hornby). Disabilities and developmental disorders affecting cognitive and neurological development are particularly common in preterm children. Hornby and Woodward estimate that from 5-15% of preterm children have neurological disorders that include

cerebral palsy, intellectual disabilities, and varying degrees of vision and hearing loss (Hornby). They also state that preterm children are also more susceptible to difficulties with mental strategies, memory, and attention, which often affect their performance in school (Hornby). Another professor at the University of Canterbury, Dr. Verena Pritchard, found that they tend to lag behind their peers in many curriculum areas, with the most noticeable gap in the area of mathematics (Pritchard, qtd. in Hornby 252). In addition, Adnan Bhutta, a professor specializing in pediatrics at the University of Arkansas, found that compared to full-term peers, children born very preterm score an average of 10.9 points lower on standard IQ tests (Bhutta, qtd. in Hornby). Other research by members of the Department of Pediatrics at the University of Alberta has shown that even when preterm children do not have any major cognitive disabilities, a large portion of them still have difficulties in speech production (Robertson, qtd. in Hornby). By themselves and in combination, these varied cognitive and learning disabilities can negatively affect children’s performance in school and by extension, later success in higher education and their careers. Preterm children also experience higher rates of social, emotional and behavioral problems, beginning in early to middle childhood and continuing through late adolescence. One study of preterm children at the age of eight found that they had higher rates of anxiety, depression, and attention problems than their peers (Anderson and Doyle, qtd. in Hornby). A similar study found that even several years later at the age of 16, many preterm children continue to experience anxiety, attention and hyperactivity disorders, and have more difficulty with peer relationships (Gardner, qtd. in Hornby). While there is no significant difference between preterm children’s overall mental health

and that of their peers, preterm children tend to be less socially integrated and have a more negative self-image (Hallin 282). Negative self-image is often associated with a lack of autonomy in relation to other people, and so this finding may be partly explained by the tendency of parents to become very protective of their preterm children due to their fragile physical state and need of additional care giving, particularly during early years. Preterm birth does not only affect the child—it affects the mother, as well. As stated in a study by Y. Greenberg, a faculty member at Tel Aviv University, “Having a critically ill baby in the NICU is very difficult to cope with, and mothers may feel a whole host of emotions as they cope with the loss of the last part of pregnancy, the dream of a healthy birth, and the loss of the first weeks or months of their baby's life.” Greenberg’s study of mothers with babies in the Neonatal Intensive Care Unit (NICU) found that 50% of those women exhibited symptoms consistent with post-traumatic stress disorder (1097). High rates of depression are also common among women with preterm babies. A study by faculty members at the University of Kansas found that within their sample of mothers, about half reported depressive symptoms throughout hospitalization, immediately after discharge of their child from the hospital, and at 6-7 weeks after discharge (O’Brien 175). In a personal interview, my cousin Patty Bartholomew said that it was very difficult to have a baby in the intensive care unit: “We constantly had doctors preparing us for the worst…almost expecting the worst to happen. That was very difficult to deal with” (Bartholomew).If a mother is suffering from extreme stress or depressed mood, relations with the child and the quality of care giving may decrease, eventually having a negative effect on the child’s well being.

Intervention Programs Although the effects of premature birth are wide-ranging and often debilitating, hospitals, health care providers, and other organizations offer many different counseling and therapy programs specifically for preterm infants and their parents. Physical, speech, and occupational therapy and educational and counseling services for family members are usually included. The introduction of the training manual for the Infant Behavioral Assessment and Intervention Program, a major early intervention program in the United States, says that the program’s purpose is to “train [caregivers] in supporting the neurobehavioral organization and development of these infants” (Infant). Patty Bartholomew described some of the aspects of working with early intervention staff at the hospital and at home: “I learn[ed] how to insert a feeding tube, take a pulse and vitals, monitor oxygen levels, etc. so we would be capable of taking care of Laurie…. Starting at 4 months, we had physical therapists, speech therapists, occupational therapists, and vision therapists visit on a monthly basis” (Bartholomew). These early intervention programs are designed to help improve preterm children’s quality of life, improve their developmental process and outcomes, and teach parents how to care for and interact with their child, as well as how to deal with stress and depression. Some researchers, however, believe that such early interventions do not in fact result in significant long-term benefits. For example, a study by researchers from the Helsinki University Central Hospital concluded that even after several months of occupational therapy focused on neurological development, “no significant benefit from early intervention could be demonstrated in terms of the long-term neurological development of extremely preterm infants” (Salokorpi 97). Researchers from the Royal

Women’s Hospital in Melbourne, Australia also found that even though preterm children receiving early intervention therapies focusing on cognitive and motor skills displayed cognitive advantages over a control group of their peers, these advantages were not sustained past early childhood, and few children displayed significant gains in motor skills (Orton 851). Such findings, however, should not be interpreted as opposing the use of early intervention programs in an attempt to improve children’s quality of life—on the contrary, such detailed study of early intervention programs demonstrates the researchers’ concern for preterm children’s well being and a desire to recognize areas of these programs that require improvement. The researchers do, however, raise significant questions concerning the efficacy of programs being administered to preterm infants. While there should be an ongoing effort to improve the quality and effectiveness of early intervention programs as new research is produced, there is a wealth of existing research indicating that early intervention programs do in fact produce statistically significant differences in preterm children’s developmental outcomes in several areas, as well as mothers’ emotional state and approaches toward parenting. A study conducted by researchers from several major universities in Norway provided parents and infants with several sessions of counseling in the format of the Mother Infant Transaction Program, an early intervention program that is designed to teach mothers to recognize their infants’ unique cues and interaction styles, as well as guide them in managing the interactions with their infants (Nordhov 385). The study found that 3 years after birth, mothers who received training from the intervention programs displayed levels of nurturing parenting that were nearly identical to those of mothers of full-term babies, in contrast to the control group mothers whose parenting

styles were significantly less nurturing (Nordhov 389). It was also discovered that intervention mothers’ level of restrictive parenting, while still higher than that of mothers of full-term babies, was significantly lower than that of the control group (Nordhov 389). These results all indicate that within the area of mother-child interactions, intervention programs can be very effective in improving mothers’ responsiveness to and relationship with their child. It has also been shown that maternal stress can be improved through early intervention programs. For example, an experiment in which mothers participated in the COPE program (Creating Opportunities for Parent Empowerment) showed that these womens showed lower levels of stress, fewer depressive symptoms, and a higher quality of interaction with their infant by the time the infant was discharged from the hospital (Ballantyne 41). Ensuring that mothers are emotionally prepared to care for their preterm children after hospital discharge is likely to have a positive effect on children’s progression once they arrive at home. Besides social interaction, early intervention programs have also been shown to cause improved developmental outcomes in physical domains. Patty Bartholomew stated in her interview that she believed that her daughter is “higher functioning overall because of her early intervention programs” (Bartholomew). Her observations are backed up by several studies. For example, a study examining the effects of occupational therapy interventions on oral feeding performance found that infants receiving the therapy were able to feed independently on average 9-10 days earlier than their peers in the control group (Fucile 829). This is a significant finding because independent feeding can have a large influence on how soon a preterm infant can be discharged from the hospital. Other

studies on physical therapy aspects of early intervention have shown that infants who receive such training gain more advanced motor skills. A group of infants who received specialized physical therapy treatments developed more functional grasping and arm control abilities compared to the control group (Heathcock 318). Such abilities, though they may seem simple, are crucial in infants’ development because being able to reach for and hold toys leads to more exploration of the environment, as well as improves related skills such as posture and visual perception (Heathcock 319). Even in long-term studies, significant differences continue to appear between children who received early intervention and those who did not. After controlling for socio-economic status and other environmental factors, preterm children who participated in early intervention programs showed significant gains in academic performance over their control group peers by age 9, and even reached cognitive achievement levels comparable to those of children born full-term (Achenbach 54). This is a significant finding because academic achievement and cognitive abilities are a strong indicator of future success in higher education, family stability, and career success, areas that have been shown to be negatively affected by preterm birth. Conclusions Preterm birth is an often-traumatic experience that can affect the vulnerable infants and their mothers in many ways. Maternal stress, physical and cognitive disabilities, and later emotional consequences can all negatively affect these fragile children’s future success and create complex obstacles and challenges that must be dealt with in both short- and long-term situations. However, the medical community is making great efforts to help these children and their mothers cope with the unfortunate

circumstance of preterm birth by providing early intervention programs designed to improve the quality of life and assist children’s growth and development. Some researchers claim that these programs are not always effective, and it is true that there is certainly always room for improvement within any treatment program as scientific knowledge expands. However, these programs have already been shown to have significant positive effects on preterm infants’ development in varied developmental domains as well as on maternal emotional state and adjustment. In cases such as little Laurie’s, these improvements can make a world of difference to the children receiving this care and the parents who are working hard to care for their children. I personally hope that these programs will continue to become readily available for children born preterm, and that they will continue to be improved by researchers invested in these children’s well being.

Works Cited Achenbach, Thomas M., et al. "Nine-Year Outcome of the Vermont Intervention Program for Low Birth Weight Infants." Pediatrics 91.1 (1993): 45. Print. Ballantyne, M. "An Educational-Behavioural Intervention for Parents of Preterm Infants Reduced Parental Stress in the NICU and Infant Length of Stay." Evidence Based Nursing 10.2 (2007): 41-. Print. Bartholomew, Patty. E-mail Interview. 07 04 2012. "Childhood disease and disorder." Encyclopædia Britannica. Encyclopædia Britannica Online Academic Edition. Encyclopædia Britannica Inc., 2012. Web. 06 Apr. 2012. Fucile, Sandra, et al. "Oral and Non-Oral Sensorimotor Interventions Enhance Oral Feeding Performance in Preterm Infants." Developmental Medicine & Child Neurology 53.9 (2011): 829-35. Print. Greenberg, Y., et al. P02-501 - when Dreams Become Nightmares: Post Traumatic Stress Disorder Symptoms in Mothers of NICU Babies. 26 Vol. , 2011. Print. Hallin, Anne-Li, and Karin Stjernqvist. "Follow-Up of Adolescents Born Extremely Preterm: Self-Perceived Mental Health, Social and Relational Outcomes." Acta Paediatrica 100.2 (2011): 279-83. Print. Heathcock, J. C., M. Lobo, and J. C. Galloway. "Movement Training Advances the Emergence of Reaching in Infants Born at Less than 33 Weeks of Gestational Age: A Randomized Clinical Trial." Physical Therapy 88.3 (2008): 310-22. Print. Hornby, Garry, and Woodward, Lianne. "Educational Needs of School-Aged Children Born Very and Extremely Preterm: A Review." Educational Psychology Review

21.3 (2009): 247-66. Print. Infant Behavioral Assessment and Intervention Program. Program Guide. Washington D.C.: Washington Research Institute, 2008. Web. Nordhov, Solveig Marianne, et al. "A Randomized Study of the Impact of a Sensitizing Intervention on the Child-Rearing Attitudes of Parents of Low Birth Weight Preterm Infants." Scandinavian Journal of Psychology 51.5 (2010): 385-91. Print. O'Brien, M., J. H. Asay, and K. McCluskey-Fawcett. "Family Functioning and Maternal Depression Following Premature Birth." Journal of Reproductive & Infant Psychology 17.2 (1999): 175. Print. Orton, J., et al. "Do Early Intervention Programmes Improve Cognitive and Motor Outcomes for Preterm Infants After Discharge? A Systematic Review." Developmental Medicine & Child Neurology 51.11 (2009): 851-9. Print. Salokorpi, Teija, et al. "Is Early Occupational Therapy in Extremely Preterm Infants of Benefit in the Long Run?" Pediatric rehabilitation 5.2 (2002): 91-8. Print.

Fragile life effects of preterm birth and early intervention programs