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Screening for Heart Defects: A Mother’s Story

Jodi's Story

Photo: Jodi and Alex"After a normal pregnancy, Alex was born at 40 weeks via C-section. Everything seemed fine at first. He nursed, and we spent a couple of hours with our family after returning to our room. Alex was then taken to the nursery to get cleaned up, but after 3 hours he still was not back with us. Finally, a man who introduced himself as the pediatrician came in and sat down. He said there was a problem. He explained that a nurse was getting him dressed to come back to our room and noticed that his nail beds were turning blue. So, she screened him using pulse oximetry. This means that she checked his oxygen level in his blood, which turned out to be low.

"Not having any idea what he was talking about, I told him that my husband and I have had asthma since childhood. He assured me that was not the problem and that they felt it was a problem with his heart. After a brief amount of time and an echocardiogram, it was determined that Alex had tricuspid atresia with pulmonary atresia, a serious heart defect.

"During the first few months of his life, Alex underwent two open heart surgeries, and he will need a third surgery when he is 2 years old. But now, at 17 months old, Alex is an active and playful toddler. He is walking, running, talking, eating, laughing and trying to toilet train himself! He also enjoys reading and playing with his sister. Even though the past 17 months have been a roller coaster of emotions, I cannot imagine how different our lives would be if that nurse did not notice the change in his color and if his oxygen level was not checked.

CDC would like to thank Jodi for sharing this personal story.

About Critical Congenital Heart Defects & Newborn Screening

February 7-14 marks Congenital Heart Defects Awareness Week. About 1 out of every 100 babies born in the US has a congenital heart defect (CHD). About 25% of these are considered critical congenital heart defects (CCHDs), also known as critical congenital heart disease1. Babies with CCHDs require surgery or other intervention in the first year of life. Like Alex, some babies born with these conditions appear healthy at first. These babies are at risk of being sent home with their families before their heart defect is found. If their heart defect is not detected, these babies can have serious problems within the first few days or weeks of life and often require emergency care.

Pulse oximetry is a simple bedside test to determine the amount of oxygen in a baby's blood. Low levels of oxygen in the blood can be a sign of a critical congenital heart defect. Therefore, screening babies using pulse oximetry can identify some critical congenital heart defects. The test is done using a machine called a pulse oximeter, with sensors placed on the baby's hand and foot. The test is painless and takes only a few minutes. Screening is done when the infant is at least 24 hours of age, or as late as possible if the baby is to be discharged from the hospital before he or she is 24 hours of age. Once their heart defect is identified, babies like Alex can be seen by heart specialists and can receive care and treatment that can prevent disability and death early in life.

Critical Congenital Heart Defects: CDC Activities

In September 2011, the U.S. Secretary of Health and Human Services (HHS) approved adding screening for critical congenital heart disease to the Recommended Uniform Screening Panel for newborns. Screening for critical congenital heart defects has begun in some states, and laws requiring screening have been proposed or passed in other states. You can see what is happening in your state and see the percentage of states in the US with laws passed or proposed by looking at this map.

CDC plays an important role in the tracking of babies with a critical congenital heart defect identified through newborn screening. The HHS Secretary tasked CDC to look at state's abilities to use state birth defects tracking programs to check how effective new screening programs are. To do this,

  • CDC, in partnership with the National Birth Defects Prevention Network (NBDPN), is assessing states' needs for help with screening for critical congenital heart defects
  • CDC worked with New Jersey and Georgia to assess tracking of screening for critical congenital heart defects
  • CDC is working with New Jersey and Georgia to look at the hospital costs of universal critical congenital heart defect screening

Working with state birth defects tracking programs can help track infants with CCHDs and collect data to understand the impact of screening in each state. This information will help state officials considering adding this condition to their existing newborn screening programs.

More Information

Reference:

  1. Mahle WT, Newburger JW, Matherne P, et al. Role of Pulse Oximetry in Examining Newborns for Congenital Heart Disease: A Scientific Statement From the American Heart Association and American Academy of Pediatrics. Circulation. 2009;120:447-58.
  • Page last reviewed: July 9, 2013
  • Page last updated: July 9, 2013
  • Content source:
    • Office of the Associate Director for Communication, Digital Media Branch, Division of Public Affairs
    • Page maintained by: Office of the Associate Director for Communication, Digital Media Branch, Division of Public Affairs
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