Today, I want to write about something that is very close to my heart. As a research personnel, working at the Heart Institute of Children’s National Health System, I have seen babies and children who are born with complex heart disease who are rushed to the hospital for open heart surgery when they are just a hour or so old. Hence, I want to bring this important topic to your attention . I have been advocating for this topic for a while. You can find more information on my facebook page.
Congenital heart disease (CHD) is the most common birth defect effecting approximately 8 in every 1000 babies born each year. Patients with Critical Congenital Heart Disease or CCHD, the most severe of form of this birth defect, require intervention before one year of age. Additionally, CCHD accounts for nearly 40% of deaths in children with congenital abnormality within the first year of life. Hence, if not detected early, critical congenital heart disease can cause severe problems and even death, with one study showing that 43% of babies diagnosed after hospital discharge from the nursery were in shock at the time of hospital readmission. Hence, the cost of missed diagnosis is enormous. Pulse oximetry, a simple, pain-free test that measure oxygen in the blood, has been recommended as a potential method for detection of critical congenital heart disease.
Adding CCHD screening, using pulse oximetry, to the usual physical exam would lead to early detection of critical congenital heart disease in newborns and save countless lives. Studies have shown that pulse oximetry has high rate of detection for critical congenital heart disease in newborn. Last year, a group of experts, both nationally and internationally, met in Washington, D.C. to discuss recommendation for best-practice for screening protocols and implementation and published strategies to implement newborn CCHD screening.
In August 2011, New Jersey became the first US state to implement state-wide screening of newborns for CCHD, followed by Indiana. Additionally, Maryland, Tennessee, West Virginia, Connecticut, and New Hampshire passed legislation for state-wide implementation of CCHD screening using pulse oximetry. Now, many of the stated are universally required by law to screen newborns for CCHD prior to discharge. However, we have still more to go. Concerns were expressed over false-positive results leading to unneeded stress for families with added extra costs of unnecessary evaluation and transfers, on top of additional staff time. However, in a study done by Bradshaw and Colleagues of Children’s National Health System and Holy Cross Hospital, which was published in 2012 in the Journal of Perinatology, showed that pulse oximetry can be implemented successfully in community hospitals without excessive number of false-positive or added staff time. Additionally, a study by Ewer and Colleagues, published in 2011 in the medical journal of Lancet, found false-positive rate of 0.8% among more than 20,000 infants screened, of which 6 had significant congenital heart disease and 40 had other illness requiring urgent medical intervention. Furthermore, a British study looking at 13 studies with data from about 230,000 newborns, published online in Lancet, showed that pulse oximetry had a high rate of detection rate for critical congenital heart defects, with a false-positive rate of 0.14%. The false-positive rate was even lower (0.05%) when newborn pulse oximetry was done after 24 hours from birth. Another British study, first published online on May, 2012 on British Medical Journal looking at acceptance rate of CCHD screening among mothers, showed that CCHD screening was acceptable to mothers and false-positive results did not increase stress.
Hence, why are we gambling with the lives of our children? Studies have shown that the test costs from less than $5 to $10 to perform and could save countless lives. The benefits of improving newborns’ quality of lives outweigh any costs. Moreover, the cost of late detection is enormous. Though children are only quarter of our population, they represent 100% of our future and we should not gamble with our future. Newborn CCHD screening should become a practice standard across US. There are still takes who have not approved any laws requiring CCHD screening. It does not cost must but the impact is enormous. Please urge your lawmakers to take action. The time to take action is now!