Congenital Heart Defects are the Leading Cause of Infant Death Due to Birth Defects
Albany, NY (August 1, 2013)
Governor Andrew M. Cuomo today announced the signing of legislation that will require birthing facilities such as general hospitals and clinics to screen newborns for congenital heart defects through pulse oximetry screening, also known as “pulse ox.” The condition, which affects the structure and function of a newborn’s heart, is present in nearly one percent of live births each year, and is the leading cause of infant death due to birth defects, according to the federal Centers for Disease Control and Prevention (CDC). Adding this screening to the required list of examinations by birthing facilities has the potential to save more newborn lives.
“It is heartbreaking when a parent loses their child to a condition that could have been easily detected and appropriately treated,” Governor Cuomo said. “This law will prevent the number one cause of infant death due to birth defects by requiring hospitals and clinics to screen newborns for congenital heart defects – increasing early detection of this condition so that we can take quick action to save the lives of our children. I am proud to sign this bill, which will dramatically improve newborn care in New York, and I thank the bill sponsors, Senator Larkin and Assemblywoman Gunther, for their work.”
According to the CDC, approximately 7,200 babies born each year have critical congenital heart defects (CCHDs), which represents about 25 percent of CHDs. CCHDs account for nearly 30 percent of all deaths of infants under the age of one year and in other infants, they can lead to serious physical or developmental disabilities.
Senator Bill Larkin, who sponsored the Senate bill, said, “This simple, cost effective screening will allow doctors to detect potentially fatal heart defects in newborns and take the necessary steps to ensure they receive proper treatment before problems occur. I commend the Governor for signing this legislation into law and for protecting infants across New York State.”
Assemblywoman Aileen Gunther, who sponsored the Assembly bill, said, “When a family is expecting a baby there is so much to be excited about - the nursery, baby clothes, the safest car seat, the best stroller. But there is one critical detail that can’t be overlooked: a simple check of the baby’s heart health. I’m proud to have sponsored the pulse ox bill. Pulse ox is simple, painless and more importantly could save a baby’s life. All babies deserve a healthy start with a healthy heart.”
Pulse oximetry screening, which tests the amount of oxygen in a newborn’s blood, can detect many CHDs and most types of CCHDs, which often are not identified through other screening methods for CHD, such as prenatal ultrasounds and routine newborn physical examinations. The screening is non-invasive and painless. It is conducted by attaching sensors to a baby’s hand and foot between 24 and 48 hours of his or her birth. If oxygen levels are too low, additional tests would then be conducted to detect any potential heart defects that may be present in the baby.
Melissa Berlin of Gloversville, a volunteer with the American Heart Association, is one of the hundreds of parents that helped push for the legislation.
“We were discharged from the hospital with a healthy baby boy. Yet, at his well-baby visit one week later, Colton began to turn blue. We were rushed to the emergency room, where we learned that he had a congenital heart defect,” said Berlin. “He has already had two out of three scheduled open heart surgeries. I am haunted by the thought that this might not have happened in the doctor’s office, and we might not have our lively 2-year-old with us today. I’d like to thank Governor Cuomo for signing this law so that hopefully no other family will ever have this worry.”
Dr. Jennifer L. Howse, March of Dimes President, said, “Since March of Dimes grantee Dr. Robert Guthrie's development of the first newborn screening for phenylketonuria (PKU) in Buffalo fifty years ago, New York State has been a pioneer and leader in newborn screening. New York should be commended for continuing to maintain a robust newborn screening panel and testing infants for over 40 inherited conditions, including all 31 conditions listed on the U.S. Department of Health and Human Services Recommended Uniform Screening Panel. Passage of this law is a fitting tribute to the March of Dimes 75th anniversary.”
Krystal Peters, a March of Dimes Mission Mom who lost her daughter following heart surgery, is also a parent who has advocated for this legislation’s passage.
“Today is an especially important milestone for March of Dimes mission parents who have suffered personal tragedy due to undiagnosed CCHD,” Peters said. “Babies are dying every day from undetected heart defects, but we have the knowledge and power to prevent CCHD from taking their lives so soon. Knowing that New York State has mandated a law requiring the 'pulse ox' test to be added to newborn screening means saving lives and spreading awareness. It means hope.”
This legislation adding CCHD screening through pulse oximetry to the list of conditions that birthing facilities are required to test will take effect in 180 days. When it does, New York will join nearly half of the states in the U.S. that now require this kind of screening. The movement to include this screening was accelerated in September 2011, when the United States Department of Health and Human Services recommended that pulse oximetry screening for CCHDs be added to its list of recommended screening tests for newborns.