Posts filed under ‘Pulse Ox Testing’
In preparing to write this entry, I began my research as I normally do, by googling. I have blogged about pulse-ox testing before, and again feel discouraged after my research. The facts are this:
8-10 in every 1000 babies born will have a congenital heart defect (the numbers concerning this fact are all slightly different. In fact, my state governor’s office was told by the State Health Department that the “numbers were slightly inflated”. I have used the more conservative number so as not to upset anyone. Either way, nearly 1% of all live births are affected by a heart defect). (cited from WebMd Heart Disease Guide)
Approximately 36,000 babies are born each year with a CHD. (American Heart Association Website)
Less than 10% of CHD’s are diagnosed before birth.
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)
Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. (Children’s Heart Foundation)
The facts go on, the statistics continue. Pulse Oximetry testing has been around for some time now, and saves lives of children with heart defects. The test is non-invasive and simple. A little monitor with a red laser on each side is pressed over the toe or finger of the baby, the oxygen levels are then tested in the blood stream. Research has been done and continues to be done on this method of detecting birth defects. Many, many researchers, scientists, and hospitals advocate for the routine and mandated screening of CHD’s of all newborns. So, why is it not done?????? Most hospitals actually have this equipment already. Why has the health department not made this part of the screening of newborns.
Here is where the semantics come in. Yes, semantics. Word games, really. I could give you all the reasons opposing the testing. The tests so far have not been conducted on a wide enough sampling of patients. The tests produce false positives, resulting in unnecessary, expensive tests. The research findings are provocative but inconclusive. Every year these semantics continue, babies die unnecessarily. Babies who could be given a chance at life by being treated for their undiagnosed CHD.
Many tests are already mandated, including PKU, and others and yet, CHD’s affect more children and more babies die from CHD’s than any other birth defect than the conditions already being screened. Don’t get me wrong, I am certainly not downplaying the serious nature of other birth defects. Every birth defect is a tragedy. So why not test for the ones that can be tested for? Some in the medical field are concerned about the added stress to parents of newborns if the test registers a false positive and the added costs of expensive Echocardiograms.
So for now, pulse ox testing is not mandatory. Newborns are not routinely screened. But, you can ask for it. You can make sure that within 24 hours of life, your baby is screened for an undiagnosed heart defect. Chances are about 1 in 100 that your baby won’t have CHD, but if you are the 1 in 100, early diagnoses and treatment helps produce a positive outlook for years to come. Ask for a pulse ox screening before you leave the hospital.
Contact your legislators and ask them to introduce a law that will mandate pulse ox testing. Visit this link to my last post on pulse ox testing for more facts and the harmful ways some in the medical community undermine the importance of this kind of legislation. Visit this link to hear the tragic yet courageous story of Kristine and her beautiful baby Cora, who had an undiagnosed CHD. Help her spread awareness and fight the killer which robbed her of her precious baby.
Help save babies like Cora and thousands of others by getting involved in the campaign to mandate pulse oximetry newborn screening.
If you have had a child, you know that your baby is given a variety of newborn screening tests for inherited and genetic disease. The most common of these tests is the PKU test, which involves a heel poking and squeezing the blood into various circles on a piece of paper. The test is then repeated at 2 weeks at the doctor’s office. Consider the following information from the website http://www.congenitalheartdefects.com/legislation.html:
“According to the Center for Disease Control and Prevention website , “One of every 33 babies is born with a birth defect. A birth defect can affect almost any part of the body. The well being of the child depends mostly on which organ or body part is involved and how much it is affected. “
“Within 48 hours of a child’s birth, a sample of blood is obtained from a “heel stick,” and the blood is analyzed for (up to) 35 treatable diseases (depends on the state), including phenylketonuria, sickle cell disease, and hypothyroidism”.
“Each year, at least 4 million babies in the United States are tested for these diseases, and severe disorders are detected in about 3,000 newborns.” This means one of every 1,300 babies tests positive for one of these diseases .
“Many birth defects affect the heart. About 1 in every 100 babies is born with a heart defect. Heart defects make up about one-third to one-fourth of all birth defects . Some of these heart defects can be serious, and a few are very severe. In some places of the world, heart defects cause half of all deaths from birth defects in children less than 1 year of age. “
Imagine how many newborn children could be helped with a NON-INVASIVE oxygen saturation level test!“
The information is sobering and yet still, CHD’s are not screened for in newborns. On August 21, 2009 the New York Times ran an article which included the following story:
“In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.”
The article was written by By Darshak Sanghavi, M.D., a pediatric cardiologist. Dr. Sanghavi goes on to explain that pulse ox screening for newborns could diagnose three-quarters of the babies whose congenital heart defects were missed or could not be diagnosed otherwise and would have been sent home. Often times these infants are not diagnosed with CHD until after it is too late, post-mortem. Dr. Sanghavi goes on to say that pulse oximetry testing is non-invasive and hospitals are already equipped with pulse ox machines. The cost would be similar to the cost of the PKU screening or hypothyroidism screening. He estimates that 1 out of every 2000 babies screened would be diagnosed with a CHD and treated, thus saving lives of babies who would otherwise be sent home without being diagnosed.
It seems that medical associations, doctors and nurses alike all agree that pulse ox screening could save lives and help in missing the diagnosis before serious problems occur. However, they also agree that more trials need to be done in order to solidify the need for the tests. According the American Heart Association, the tests run thus far have varied from being 0%-100% accurate. It is agreed that during the first 24 hours false negatives are more common as babies pulse ox levels vary. After the first 24 hours however, it seems that the screening is generally very accurate. Because of these variances and discrepancies, the American Heart Association has concluded that “Currently, CCHD is not detected in some newborns until after their hospital discharge, which results in significant morbidity and occasional mortality. Furthermore, routine pulse oximetry performed on asymptomatic newborns after 24 hours of life, but before hospital discharge, may detect CCHD. Routine pulse oximetry performed after 24 hours in hospitals that have on-site pediatric cardiovascular services incurs very low cost and risk of harm. Future studies in larger populations and across a broad range of newborn delivery systems are needed to determine whether this practice should become standard of care in the routine assessment of the neonate.” In other words more testing is needed. Unfortunately, many professionals have taken this to mean that the American Heart Association doesn’t feel the testing is necessary or useful. Charles Bankhead of the website MedPage today, which is supposed to be a useful tool for medical professionals, has written an article entitled “Routine Pulse Oximetry for Newborns Not Supported”. This article gives the erroneous assumption that because of the high rate of different outcomes of the studies already performed, the American Heart Association doesn’t support the testing, when in fact the AHA stated clearly on their website that it does support testing and would like more trials to be run so the screening of infants can be put into place. The article on Medpagetoday.com actually goes so far as to list an action point in the article in which physicians are encouraged to “Explain to patients that the American Heart Association and American Academy of Pediatrics have concluded that a test to detect congenital heart disease in newborns should not be performed routinely.”
These statements are harmful to the future of pulse ox screening in infants. What can we do? Get involved!! Contact your local congress representatives and senators and tell them you would like to see a bill that would mandate pulse ox testing in infants. Contact the American Heart Association asking them what can be done and start a grass roots movement with a petition asking laws to be passed the mandate this life saving testing. Very few states have any kind of legislation to support CHD screening. Let’s save some lives and start by screening for the Number 1 birth defect, heart defects.