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Improving the Health of Infants with Congenital Heart Defects


Congenital heart disease (CHD) affects an estimated 40,000? babies born every year, making it the most common birth defect found in infants.1 Though some forms of CHD do not result in health problems later in life, about 25 percent of infants with CCHD have a critical CHD, which can lead to negative outcomes if not diagnosed soon after birth. As a nurse working in pediatric cardiology, Elizabeth B. Mikula, MSN, RN, CPN, CPHQ, saw the potential to improve outcomes for these vulnerable patients through better screening processes.  

While caring for infants with CHD and other pediatric patients at Children’s National in Washington, D.C., Elizabeth was approached by cardiologist Gerard Martin, MD, FAAP, FACC, to collaboratively research early screening. Ultimately, they hoped to use this research to inform the development of guidelines for screening infants for CHD in community hospitals, which have fewer resources than academic facilities where this type of screening typically takes place.

Because this screening is especially important for infants, a non-invasive and painless test was necessary. Elizabeth and her team turned to pulse oximetry, or “pulse ox,” screening, a simple test that uses a small, soft sensor wrapped around the right hand and one foot to measure the heart rate and oxygen level in the blood. Because infants with CHD may have low oxygen levels in their blood, pulse ox screening can help diagnose CHD before the infant becomes sick, allowing for early intervention and a better opportunity to lead a healthier life.

Elizabeth conducted research at Holy Cross Hospital in Silver Spring, Md., a hospital that delivers roughly 12,000 babies each year, and found that screening using pulse ox was easily integrated into the existing workflow of a high-volume hospital. This initial success led Elizabeth to develop an implementation guide called the CHD Screening Program (CHDSP) Toolkit to help other hospitals.

Following the development of the toolkit and implementation in a few hospitals, Elizabeth and her team became active in national efforts focused on CHD newborn screening. They used this platform to explain the importance of screening to hospital executives and front-line healthcare employees like nurses. 

“Nurses were hugely involved in the implementation process because they are so heavily involved in patient care,” said Elizabeth. “At almost all facilities, the nurses led the implementation and continue to lead the screening now.”

Using the toolkit, nurses and healthcare providers are able to begin implementing pulse ox screening for newborns, training individuals in the hospital and educating families involved in the process. The toolkit resources provide recommendations and step-by-step implementation instructions, so top-level care is provided for these vulnerable patients and their families. This implementation process was a testament to the integral role nurses play in improving patient-focused processes in healthcare.

“We need to recognize the fact that nurses are innovators by nature,” Elizabeth said. “By encouraging them to move forward with the exploration of their ideas, it will ultimately lead to improvement in the facility and patient outcomes.”

Because of Elizabeth and other innovative leaders on her team, the CHDSP Toolkit has successfully been implemented in 47 states across the country and abroad, in countries as far away as the United Arab Emirates. In a study entitled “Association of U.S. State Implementation of Newborn Screening Policies for Critical Congenital Heart Disease with Infant Cardiac Deaths,” infant deaths from critical congenital heart disease (CCHD) decreased more than 33% in states that mandated screening for CCHD using the pulse oximetry test. The toolkit is now available for hospitals to access digitally in various languages, including Spanish, French, German, Arabic, and Mandarin, making the resources available to almost all providers who want to implement pulse ox screening for infants. 

Watch the below video to learn more about Elizabeth and how her innovative work changed the lives of children and families around the world, like the Gordon family. 

1. CDC: "Screening for Critical Congenital Heart Defects." https://www.cdc.gov/ncbddd/heartdefects/screening.html

Shared from Johnson&Johnson

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