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.
As part of his Richard C. Beyda endowed professorship in 2007, Gerard R. Martin, MD, senior vice president and co-director of the Children’s National Heart Institute, reviewed past evidence and developed a research study to evaluate pulse oximetry (pulse ox) screening for CHD in neonates. Pulse ox is a common medical procedure used to measure the amount of oxygen in a person’s blood. The procedure is non-invasive, painless, inexpensive, and takes only seconds to perform. It has been found that pulse ox can be used to help identify serious CHD in newborns. Dr. Martin was inspired by the idea of using pulse ox to improve the early detection and diagnosis of serious CHD. 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, former 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.
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, shepherded 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 research study identified several babies with CHD before they left the nursery and when it was complete Holy Cross decided to make pulse ox screening standard of care.
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. The team created a toolkit that nurseries may use to start a screening program in their nursery. This toolkit has been sent to over 200 hospitals, associations and advocates both nationally and internationally who have expressed interest in improving detection of serious CHD.
In October, 2010 the Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children recommended to Secretary Kathleen Sebelius that CCHD screening become a part of the recommended uniform screening panel. In fall 2011, the Secretary supported this recommendation. The American Heart Association, American College of Cardiology, American Academy of Pediatrics and March of Dimes all endorse CCHD screening. Dr. Martin and Elizabeth Bradshaw have participated in associated advocacy and scholarship activities.