I am a member of Consumers Union's Safe Patient Project. Why? My son died from poor medical care when he was just 11 days old. There were many lapses in my son's medical care. Now, I work for safe care to reach the newborn bedside.
After all, the infant mortality rate is a common measure of a country's health. The US infant mortality rate is the worst among industrialized nations. We can change that.
Fortunately there is a new recognized standard of care for newborns. To work, it has to be implemented.
Pulse oximetry newborn screening
to detect the most common birth defects (congenital heart defects) has endorsed by the relevant professional societies – the Academy of Pediatrics
, American College of Cardiology
(link for subscribers) and the Journal of the American Medical Association
(JAMA). This screening can significantly close the diagnostic gap for critical congenital heart defects. Because of its worth and ease of implementation the screening was added to the federal Recommended Universal Screening Protocol by Kathleen Sebelius this Fall.
Only three states have passed laws requiring it however. Only one is actively screening now - New Jersey. Since mandatory screening began in New Jersey on Aug 31, 2011, there have been two babies saved (that we know of).
There is pending legislation and grassroots work being done across the country by a large network of moms and dads. In Pennsylvania the pulse ox bill (Senate Bill 1202) is named after my son. It is my only holiday wish this year - pulse ox for every PA newborn. http://jamessproject.com/blog/a-newborns-christmas-wish/
Can you help spread the word? It seems crazy today that I would have to drive to New Jersey to deliver my baby to make sure he received safe care. And then, if they did find a congenital heart defect, I would have to drive the baby back here to PA for care since NJ has no pediatric cardiology centers.
Achieving universal implementation in PA can happen too. There are two work arounds right now:
- Moms and Dads. Parents can ask about this new screening and request that an oxygenation saturation leve (sats) l of their baby’s blood be shared with them after 24 hours of life and before discharge. Any sats under 95% is worth further investigation.
- Clinicians. While a few institutions in Pennsylvania claim to be implementing this screening (Main Line Health hospitals for one), many are not and many are not aware of the screening’s value and ease of implementation despite having the technology at their newborn bedside. (Even if the institution claims participation, without mandated universal implementation there can be great variation in delivery.) A clinician can still perform a pulse oximetry screening on a newborn after 24 hrs of life and before discharge. Then if the sats are low, the clinician has the evidence to push for further evaluation.
Expectant parents moms would need to deliver a newborn in New Jersey to make sure he/she received safe care. And then, if they did find a congenital heart defect, Pennsylvania babies would have to be driven back to Pennsylvania. New Jersey has no pediatric cardiology centers. Pennsylvania has three.
Mary Ellen Mannix, MRPE