Newborn Screening Around the World
In 2011, the Secretary of the US Department of Health and Human Services approved a recommendation that all newborns be screened for critical congenital heart disease (CCHD). When we think of health care innovations like newborn screening, we think of America as the leader. But when it comes to CCHD, the US was actually not the first to implement universal screening. In fact, the emirate of Abu Dhabi, the capital city of the United Arab Emirates (UAE), was the first to add CCHD to its newborn screening program in 2010.
The CCHD program at Children’s National Medical Center in Washington, DC helped Abu Dhabi lead this remarkable effort. This week, we hear from Elizabeth Bradshaw, who works at Children’s National as a nurse, coordinator of the CCHD newborn screening program, and a lead team member of this project with Dr. Gerard Martin.
The team began working through their existing relationships with hospitals and health care providers who, in the past, referred some of their pediatric cardiology patients to Children’s National, then expanded to the Health Authority of Abu Dhabi and other public leaders. They then began educational efforts by translating their CCHD toolkits, which are educational and skill-building resources that are widely used in American hospitals, into Arabic. But they did not stop with language. Elizabeth and the team “wanted the toolkit to be culturally sensitive and competent,” so they redesigned images and themes to better relate to families in the Middle East.
The bulk of the project involved traveling to two initial hospitals in Abu Dhabi to “train the trainers.” This aimed to empower physician and nursing “champions” with the skills to implement a hospital-wide CCHD screening program and to train their colleagues. The team found that the educational efforts “were successful in showing them that this extra test will help to identify babies with CCHD” and will take very little time to do so.
In the first year alone, 90% of babies born in Abu Dhabi were screened and 10 were found with CCHD. She remarks that this is a “pretty impressive find!” especially considering that these heart defects may not have been found without the CCHD program. The first phase of the project gave Elizabeth “an honest picture” of the future expansion of CCHD screening. She notes that these two initial hospitals were “helpful, especially for the ultimate success of the program.”
One barrier that Abu Dhabi faces, Elizabeth finds, is access to specialists in pediatric cardiology to address the needs of babies with positive screening results. To respond to this challenge, the Children’s National team worked with newborn screening providers on plans for referrals and follow-up to make sure they could coordinate fast and effective care for all patients.
The United States and UAE have the resources to implement and sustain a universal CHD screening program. But a lot of rural and poor regions of the world do not have the resources to do so. Even though some companies that manufacture medical devices are beginning to distribute CCHD screening equipment to resource-poor regions, there are serious concerns. It is especially “unfair to test the babies and then not have pediatric cardiology care available.” Though resource-poor regions face this limitation, there are exciting grassroots initiatives by individual hospitals and physicians to screen for CCHD, such as those in the Philippines and Mexico, and to coordinate follow-up care.
In 2012, Children's National and Baby's First Test teamed up to create the Heart Smart video series- videos that discuss pulse-oximetry as a part of newborn screening to check for critical congenital heart disease. One video focuses on providing information for parents about the screening while the other informs providers about how the screening is actually performed. In the second year of this project the videos will translated into five additional languages increasing their usability both in the US and abroad.
Despite the challenges and the exhaustive time spent training, coordinating, and traveling, Elizabeth loves the opportunities awarded to her by this project. It allowed her to apply her experiences in research, designing evidence-based materials, and screening in the US “to the bedside” in a country halfway across the world. She finds it incredibly rewarding to work on a large scale: to transition from seeing individual patients as a nurse to “positively impacting many babies all over the world.”