The Secret Theft of Human Rights

BY LINDSEY HIEBERT.
Photography by Lindsey Hiebert.

preterm birth5

Birth and human rights are closely related; rights are principles and standards that protect individuals, and they are earned at birth, when individuals can begin to fruitfully take advantage of them. Many obstacles prevent human rights from being fulfilled, including oppressive regimes and discrimination. Birth, the same event that invites the realization of human rights, can also present an obstacle. Birth and the immediate days following it offer the highest concentrated risk of death in a person’s lifespan.

Approximately 15 million babies are born too soon each year, and each one has an unfair disadvantage. Up to 25% of preterm babies will experience blindness and 40% of extremely preterm births will suffer from chronic lung diseases, among other chronic inflictions. These infants come into a world that is often not ready for their entrance or prepared to support them. Furthermore, prematurity has been historically left off the global agenda.

The issue of prematurity is not deliberately neglected. Parents and professionals have advocated for the issue; people who have personally witnessed the suffering of a one-pound baby struggling to breathe. The struggles of preterm birth are predominantly experienced in isolated hospital rooms in developed countries, while in developing countries many preterm babies are never given the chance to survive at all due to the lack of intensive care. The victims have no voice and rely on others to speak for their pain and needs. One challenge in gaining support and global attention has been the lack of reliable data. Although preterm birth is an ancient health issue, the first data on its global and regional rates was not published until 2009 by the World Health Organization and the March of Dimes Foundation.

Born Too Soon, the Global Action Report on Preterm Birth, is a joint effort of almost 50 international, regional and national organizations, and is led by the March of Dimes, The Partnership for Maternal, Newborn & Child Health, Save the Children, and the World Health Organization. The report is in support of the Every Woman Every Child effort, which was initiated by UN Secretary-General Ban Ki-moon at the United Nations Millennium Development Goals Summit in September 2010. Every Woman Every Child aims to save the lives of 16 million women and children by 2015. The first report was released in 2012 and showed that of 65 countries with reliable trend data, all but 3 showed an increase in preterm birth rates over the past 20 years. Preterm birth is a global problem, but “global” does not mean it is not plaguing our domestic communities as well. The United States’ rate of preterm birth ranks 131st out of 184 countries’, a ranking that is similar in magnitude to those of many developing countries. Nonetheless, a survival gap exists between wealthy and poor countries wherein 90% of extremely preterm babies, with less than 28 weeks gestation age, die within the first few days of life in low-income countries, and only 10% or less of the same gestational age die in high-income countries. The two biggest priorities from the Born Too Soon report are first to close the survival gap for babies in low-income countries with improved obstetric and newborn care, and second to develop innovative solutions to prevent preterm birth worldwide.

For a complicated issue such as preterm birth, both effective prevention and care are critical to reducing the global burden. The 2012 report identified that a knowledge gap limits progress in prevention measures, while an action gap limits progress in improving care. Contrary to popular belief, 75% of premature births can be prevented without intensive care. Extremely low-cost, highly effective measures such as skin-to-skin contact, known as Kangaroo Mother Care, and additional support for breastfeeding could lead to 450,000 fewer deaths due to preterm birth each year. Moreover, the provision of antenatal corticosteroids could save around 375,000 lives each year and basic neonatal resuscitation training with programs such as Helping Babies Breathe from the American Academy of Pediatrics and other partners has the potential to reduce preterm mortality by 10%.[1]

Despite the gloomy reality of preterm birth, hope does exist. In the United States, the national preterm birth rate which reached a peak in 2006 at 12.8%, is finally beginning to decline. Much of this success is due to support and leadership of organizations such as the March of Dimes. For example, the “Healthy Babies are Worth the Wait” campaign urges health care providers and patients not to schedule a delivery until at least 39 completed weeks of pregnancy, unless there is a medical reason to do so. A Leapfrog Group survey of 757 hospitals found that the average rate of early elective deliveries was 17% in 2010.[2] In addition, babies delivered at 36 to 38 weeks had two and a half times the number of complications compared with those delivered at 39 to 40 weeks[3]. The March of Dimes reports that a baby’s brain at 35 weeks gestation weighs only two-thirds of what it will weigh at 39 to 40 weeks. This 39 Weeks initiative gained momentum after Intermountain Healthcare system instituted a strict monitoring routine in 2001, and the rate of Caesarean sections dropped from 28% to less than 3% after six years[4].

Interdisciplinary approaches to addressing root causes of preterm births are being further explored in the context of transdisciplinary research centers. Two centers currently exist. The first and the original center is the Prematurity Research Center at Stanford University School of Medicine. The second is an Ohio Collaborative of the University of Cincinnati College Of Medicine, Cincinnati Children’s Hospital Medical Center, the Ohio State University Wexner Medical Center, Nationwide Children’s Hospital, and the Case Western Reserve University MacDonald Women’s Hospital, Rainbow Babies & Children’s Hospital, and MetroHealth System. These centers bring together basic sciences such as genetics, genomics, molecular biology and developmental biology, clinical sciences, epidemiology, and social sciences such as sociology and anthropology, in addition to engineering, computer science and bioinformatics. These centers have a commitment to craft investigational collaborations, integrated datasets, and innovative analytic tools that will generate new insights into the complex causes of preterm birth. Current projects include the Sociobiology of Racial Disparities in Preterm Birth, Evolutionary Synthesis of Human Pregnancy, and Pattern Recognition Discovery, which uses new computer-based pattern recognition techniques found in other industries such as credit card fraud detection and social media advertisement targeting.[5]

For some issues, politics and legal terms cannot capture the entirety of what is at stake. The birth of a child is an experience that transcends the limitations of political parties, governmental differences, and even arguments about the inefficiencies of one health care system compared to another. Children are the most vulnerable members of our society, and those born prematurely are especially vulnerable. As human rights begin at birth, every baby has the right to a healthy birth.

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[1]March of Dimes, PMNCH, Save the Children, World Health Organization. Born Too Soon: The global action report on preterm birth. 2012

[2]March of Dimes, California Maternal Care Collaborative, and Maternal, Child and Adolescent Health Division; Center for Family Health California Department of Public Health. A California Toolkit to Transform Maternity Care: Elimination of Non-medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age. 2011

[3]Bates, E., et al. (2010). “Neonatal outcomes after demonstrated fetal lung maturity before 39 weeks of gestation.” Obstet Gynecol 116(6): 1288-1295.

[4]March of Dimes, California Maternal Care Collaborative, and Maternal, Child and Adolescent Health Division; Center for Family Health California Department of Public Health.

[5] March of Dimes Foundation. Prematurity Research Center. Accessed 5 March 2014.Prematurityresearch.org.

 

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