Congenital Heart Disease Screening: Amani's Story

What began as a research study at Holy Cross Hospital conducted by Children's National Medical Center saved Amani Andemariam's life - and will save the lives of many more babies born in Maryland.

Amani was born in March 2009 at Holy Cross Hospital and seemed to be a healthy and happy baby. While Amani was still in the hospital nursery, his parents, Zeggai and Ellen, were educated about a voluntary screening being offered to detect serious heart problems.

Amani's parents learned that if congenital heart disease -the most common type of birth defect - goes undetected, it could lead to delays in growth and development, a seriously weakened heart or even death.

"We thought, why not take the test?" Zeggai explains. "But we never expected there to be a problem."

A Simple Test 

The test, pulse oximetry, measures the amount of oxygen a baby carries in his or her blood by shining a special light through the baby's skin. It helps to find babies who do not have as much oxygen in their blood as they should, which is common among babies who have serious heart problems.

The test is not painful and only takes a few minutes. The pulse oximetry test is conducted at the hospital after a baby is 24 hours old.

"Detecting critical heart defects in newborn infants can be challenging for care providers. The screening for 
congenital heart disease provides an increased degree of confidence that newborns with this disease will be detected within the first two days of life, improving outcomes for these patients and their families," Sandra Cuzzi, MD, pediatric education director, Holy Cross Hospital, says.

A Serious Problem 

Amani had the pulse oximetry test two days after he was born and the results showed a lower reading than expected. Amani was moved to the Neonatal Intensive Care Unit (NICU)for around the clock monitoring and care, and additional testing. The Holy Cross Hospital NICU was the ideal place for Amani because it cares for more critically ill newborns than other hospital in the state.

The Andemariams were referred to Jeffrey A. Becker,MD, a board-certified pediatric cardiologist from Children's 
National. Dr. Becker is affiliated with Holy Cross Hospital through the hospital's long-standing partnership with Children's National. Typically, Dr. Becker accepts appointments for infants, children and adolescents every Thursday at Holy Cross Hospital.

A Heart Repaired 

Some babies born with heart problems need surgery right after birth while others need to be closely monitored. In all cases, it is vital to know the condition exists so it can be treated at the appropriate time, which is before symptoms occur.

For Amani, Dr. Becker determined that he could go home from the hospital but would require close monitoring.

"We started with having monthly check ups, then every three months and then every six months," Zeggai says. "Then when Amani was two years old, he needed to have the heart surgery."

In April 2011, Amani had heart surgery at Children's National to correct his heart condition. "He is doing great," his dad says. "He is 100 percent!