Our Story
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Some babies born with serious congenital heart disease can appear normal and healthy at birth. These babies may be sent home with their mother without showing any signs or symptoms of their condition. However several days after birth serious complications may occur that require that the baby be taken to an emergency department for lifesaving care. At this point, pediatric cardiologists work to stabilize the baby before surgical interventions can be performed. The cost can be considerable, as well as the risk to the baby’s life, growth and development.
In early 2007, Dr. Gerard R. Martin, senior vice president and co-director of the Children’s National Heart Institute, received the C. Richard Beyda Professor of Cardiology Award. In recognition of this award Dr. Martin presented a Grand Rounds on current research surrounding the use of pulse oximetry (or pulse ox) screening for congenital heart disease in newborns. Pulse ox is a common medical procedure used to measure the amount of oxygen in a person’s blood. The procedure is non-invasive, usually painless, inexpensive, and takes only seconds to perform. It has been found that pulse ox can be used to help identify serious congenital heart disease in newborns. Dr. Martin was inspired by the idea of using pulse ox to improve the early detection and diagnosis of serious congenital heart disease. In addition, Dr. Martin became interested in taking the current research a step further and investigating the implementation of pulse ox testing as a standard of care for newborns.
At a dinner with state legislators held a few weeks later, Dr. Martin discussed pulse ox screening for serious congenital heart disease with representatives and staff from the Maryland State House. The idea was well received, and the seed of interest grew into a plan of action. The Congenital Heart Disease Screening Program was taking shape. Dr. Joseph Wright, senior vice president of the Child Health Advocacy Institute at Children’s National joined Dr. Martin to begin advocating for this important procedure as standard of care for newborns. A plan to test the program, develop a toolkit to train health professionals to perform the assessment, and a method of data collection to use in future advocacy efforts was developed.
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As with many programs, the key to getting it off the ground is funding. Representatives from Children’s Foundation approached The Elsie and Marvin Dekelboum Family Foundation, who selected the Congenital Heart Disease Screening Program (CHDSP) as a project to fund.
Dr. Martin knew collaboration with a community hospital was important to begin the program. He approached Dr. Sandra Cuzzi, a Children’s National hospitalist who sees patients at Holy Cross Hospital. Holy Cross is one of the busiest birthing centers in metropolitan Washington, DC, and is in close proximity to Children’s National. Dr. Martin and Dr. Cuzzi introduced the idea to the leadership at Holy Cross.
Soon the team began working with the staff in the newborn nursery at Holy Cross and the institutional review board (or IRB) at Holy Cross. Dr. Martin and Elizabeth Bradshaw, a nurse brought on board to oversee the CHDSP research and program development, sheparded the project through the development and approval process. In January 2009, the study began and newborns at Holy Cross received pulse ox test before they left the nursery.
The Child Health Advocacy Institute and clinicians at Children’s National’s Heart Institute share the ultimate goal of making screening for congenital heart disease a standard practice for all newborns. We will to continue to advocate for the testing, and plan to bring more institutions on board.
If you are a clinician interested in beginning a CHD Screening Program in your hospital, or an expectant parent interested in finding a hospital that provides this test, please contact Elizabeth A. Bradshaw, MSN, RN, CPN for more information.
Phone: 202-476-5270
Email: ebradsha@cnmc.org
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