Because many congenital heart disease cases are overlooked in the prenatal stages or even in early infancy, a government agency has begun recommending screening newborns for critical congenital cyanotic heart disease (CCCHD).
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children recently announced that there is cause enough to get CCCHD screenings for newborns, which is a severe type of heart defect that is life-threatening.
The Health and Human Services Department now recommends adding CCCHD to the newborn screening panel, according to a release from the Health Resources & Services Administration. The recommendation is supported by a variety of groups including the American Academy of Pediatrics and the Children’s Heart Foundation.
The Secretary’s Advisory Committee added the screening recommendation, but also noted that more research needs to take place quickly to ensure the whole process is working correctly. This means the National Institutes of Health will now research the entire screening process. The Health Resources and Services Administration will look closely at standards, and the Centers for Disease Control and Prevention will look at outcomes after completing its study, according to a release from HRSA.
Missed or even delayed diagnosis of CCCHD can result in injury or infant death. The newborn injuries can include morbidity or injury to vital organs that can be permanent.
The existing CCHD detection approach of ultrasounds and physical exams in the nursery have failed to identify enough cases of the heart disease, according to the Journal of the American Academy of Pediatrics’ website. Studies have shown that pulse oximetry ¨C a painless, non-invasive technology ¨C is universally available to add to newborn assessments.
The motion-sensitive pulse oximeters come in both disposable and reusable varieties, and both options are acceptable detection devices, according to the Pediatrics website. To reduce the number of false-positive results, Pediatrics recommends that screening occurs more than 24 hours after the birth or as close to the time of discharge from the hospital as possible.
The Secretary of Health and Human Services Kathleen Sebelius announced that CCCHD will be added to the recommended uniform screening panel in September. It is up to each state to determine how to incorporate the new screenings into their own programs, according to the Pediatrics website.
The HRSA has pledged to develop training and educational materials for parents and relevant health care professionals. Public health and professional health care organizations will help the development, but it will be funded by the HRSA.
If a medical professional fails to order a critical test that leads to a birth injury or fails to diagnose a heart problem that needs immediate care, the family has the right to seek compensation for additional health care costs and pain and suffering caused from the missed diagnosis.