A simple, non-invasive, cheap and widely available piece of equipment can save lives. Pulse oximetry is used standardly in medicine to check oxygen saturation and has been found to be effective in screening for congenital heart defects. Pulse ox screening is a type of newborn screening.
Pulse oximetry is one tool to screen for critical congenital heart defects. For more information about pulse oximetry screening for CHD, visit this FAQ developed by the Children’s National Hospital Congenital Heart Disease Screening Program, or look at this sheet developed by the Centers of Disease Control.
Advocacy efforts currently focus on working on state legislation mandating pulse oximetry screening and garnering support from lawmakers, clinicians and the public. Pulse ox screening, also known as newborn heart screening, is a newborn screening considered to be point of care because follow-up is immediate.
While pulse oximetry is an easy piece of equipment, it’s still a piece of medical equipment and using pulse ox to detect critical congenital heart defects is something that’s been discussed and debated.
- Pulse oximetry does not always catch heart defects. It’s a simple screening that can only indicate a problem might be possible. Some babies with heart defects have high saturation levels. Also, not every baby with a low pulse ox level has a heart defect. Other reasons for false results include: a respiratory issue with the baby, screening conducted at the wrong time, baby is fussy during screening and other medical reasons. According John Hopkin’s Children’s Center, as few as 20 percent of CHD are detected by ultrasound prenatally, other estimates put that mark at about 50 percent.
- Not every clinician agrees with pulse oximetry screening. Be prepared to face some criticism of pulse ox for CHD from clinicians and others. To combat this, research pulse ox and become familiar with common objections. As the studies and research are further disseminated, the less objections you should see.
- When advocating for pulse oximetry screening, make sure to push for doing the screening correctly. Incorrect screening can result in higher false positives and false negatives. Luckily, screening programs have taken place both in this country and internationally. Between these and a pilot program in Minnesota, protocols that are work have been developed. Make sure that officials developing programs in your state are aware that protocol help is available.
- Not every state will need a bill passed to implement screening. Some states will implement based on the federal recommendation. However, pulse ox advocates are needed in every state to work with clinicians, non-profit organizations and patients to educate about pulse oximetry screening.
- The process in each state will likely be different because of all the factors involved including political differences, receptiveness of clinicians in your state and the help you receive from other states.
- Parent and clinician education is an important part of the screening process. Parents need to be told that screening doesn’t detect all defects and given the signs and symptoms of CHD.
- Advocacy work is not just about contacting legislators. Work with other CHD groups, clinicians, the department of health in your state and hospital officials.
- Always remember that by advocating for congenital heart defect screening, you’re helping save and improve lives. Babies die from undetected congenital heart defects. Developmental delays and brain damage can occur with late diagnosis.
This site is designed to help you, a pulse oximetry activist seeking to improve the detection of congenital heart defects. If you’re interested in a resource not listed here, please contact us so we can help.
If you’re still wondering why this screening needs to be done, watch this extremely moving video from the Texas Pulse Oximetry Project: