Running head: THE PULSE OXIMETRY TEST Pulse Oximetry Test- Saving Infants with Critical Congenital Heart Defects Megan Tolton First Colonial High School LSA Research & Writing THE PULSE OXIMETRY TEST 2 Abstract This paper is about the pulse oximetry test and its need to be passed into legislation in all states. This test has been passed in several states already but there are seventeen states that still need to pass and introduce this legislation. Virginia is the only state that has implemented an executive order for this test. The pulse oximetry test is used to help detect critical congenital heart defects in babies when they are born. It allows doctors to treat the defect as fast as possible without harming the baby in any way. It has been a popular test among many parents who have benefited greatly from this test and saved their baby from dying. The pulse oximetry test can allow parents to be relaxed when their baby goes home for the first time. THE PULSE OXIMETRY TEST 3 Pulse Oximetry Test- Saving Infants with Critical Congenital Heart Defects What is the Pulse Oximetry Test? What It Measures Every year newborns are delivered in hospitals around the United States. Many of them healthy yet 8 in every 1000 babies will be diagnosed with a congenital heart defect (Frequently Asked Questions- Children’s National). Over 4.2 million babies are born each year in the United States, and congenital heart defects are the most common defect in a newborn (U.S. Health & Human Services & Critical Congenital Heart Defects). Congenital heart defects cause infants hearts to look different. Many infants are able to grow and function normally with a congenital heart defect (Frequently Asked Questions- Children’s National). However, critical congenital heart defects need to be treated immediately and can cause death in infants if not treated fast enough. 18 newborns for every 10,000 births will be diagnosed with a form of a critical congenital heart defect (Pulse Ox Screening for CCHDs, 2012). One test known as the pulse oximetry test helps to measure the level of oxygen in the baby’s blood, to help detect a possible critical heart defect. A low level of oxygen in the blood could mean a critical congenital heart defect (O’Dowd, 2013). The test helps prevent a family from taking their baby home and then seeing their baby turn blue from lack of oxygen, and then dying. Many families have encountered this horrific sight, but the pulse oximetry test can tell doctors to treat the issue immediately. The pulse oximetry test provides a noninvasive yet affordable screening that can save a baby’s innocent life from dying of a critical congenital heart defect. The Invention The pulse oximetry test was first created in the 1970s, but now it has become a widely used test (Children’s National, 2013). The echocardiogram is needed in detecting a heart defect, THE PULSE OXIMETRY TEST 4 and is paired with the pulse oximetry test. If the test comes out positive for a critical congenital heart defect, the echocardiogram helps in identifying the type of critical congenital heart defect. Many rural hospitals however, don’t have access to equipment such as the echocardiogram due to its cost, preventing many hospitals from using the pulse oximetry test. The lack of pediatric cardiologists is also an issue in many rural hospitals (Roan, 2011). The 7 Deadly Heart Defects The pulse oximetry test was created to detect seven critical congenital heart defects which are known as the hypoplastic left heart syndrome, pulmonary atresia (with intact septum), tetralogy of Fallot, total anomalous pulmonary venous return, transposition of the great arteries, tricuspid atresia, and truncus arteriosus (Pulse Oximetry Screening for CCHDs, 2012).These are critical and many infants that are diagnosed with a critical congenital heart defect will eventually need a heart transplant. The Screening Process The pulse oximetry is a quick and painless test that can be done for a newborn. The process for the test is very simple and quick and done after the first 24 hours of life for the baby. According to Johns Hopkins Health Library, a clip looking device is placed on the baby’s finger or toe. This test measures the blood and oxygen saturation levels. The doctors are then able to evaluate the levels of oxygen needed for the baby after seeing the amount of oxygen in the blood. According to the CDC, the test takes around 10 minutes to complete. Many families face the possibility of their child testing positive for a critical congenital heart defect. This test is able to reassure families that although their baby may have something wrong with their heart, doctors THE PULSE OXIMETRY TEST will be able to correct the problem or be able to transfer the baby to a major medical center that specializes in pediatric cardiology. Implementing Pulse Oximetry Legislation Parents Support for Legislation Parents are the main reason that this test has been introduced into legislation. Stories of hope and tragedy have caused state legislators to rethink the idea of vetoing the legislation, which happened in Virginia. Statistics have also come into play. As mentioned before, statistics have shown that 8 in every 1000 babies are born with a congenital heart defect (Frequently Asked Questions- Children’s National). Also congenital heart defects are the most common types of birth defects in babies. 1 in around 6 babies who are undiagnosed for congenital heart defects will die unfortunately (Roan, 2011). And that one child out of every six children most likely had a critical congenital heart defect. According to Los Angeles Times writer Shari Roan, around 2,000 more babies could be diagnosed, if the pulse oximetry was implemented into legislation. However, seventeen states have yet to pass the legislation making it a requirement that all hospitals conduct the pulse oximetry test on every newborn after its first 24 hours of life (Fox, 2013). Rural Areas Fight for Legislation Many parents must research ahead of time to figure out if the hospital they are planning on going to has the pulse oximetry test when they deliver their baby. States with major medical centers most likely have this test, but states with mainly rural areas, such as Montana, are less likely to have the test. Montana has yet to pass this test. The echocardiogram is expensive to purchase. But the echocardiogram is needed to identify any heart defects in the baby along with 5 THE PULSE OXIMETRY TEST 6 the pulse oximetry test. Even if these rural hospitals have the pulse oximetry test, they are often worried about their financial status. They worry that if they come across a baby with a critical congenital heart defect that has a false positive, and they send it to a major medical center, they’ll be losing money due to the unnecessary transfer of the infant. Many pulse oximetry test advocates are trying to spread the implementation throughout the Midwest. The Midwest, of course, has many rural hospitals that lack the funding to afford certain equipment and don’t provide all the services. Advocates claim that if it spread even further throughout the Midwest, over 90 percent of critical congenital heart defects would be detected eliminating the possibility of death in newborns. Some of these Midwestern states include Illinois, Wisconsin, and Iowa. The American Heart Association has been working closely and diligently with these states and the states legislators in order to devise a plan to implement the pulse oximetry in all of the state’s hospitals. Wisconsin pulse oximetry legislation was introduced in March (American Heart Association Focuses on Newborn Screenings, 2013). First States Legislation New Jersey was one of the first states to pass this legislation (O’Dowd, 2013). It passed into legislation in earlier part of 2011. The state legislators made it so that all birthing facilities in New Jersey offer this test and it is mandatory for all babies to receive the test after the first 24 hours of life. This eliminates the pressure of the ultrasound screening to detect the critical congenital heart defects, in which they were only detecting half of the critical heart defects in infants. When the child receives an abnormal reading, they are retested to confirm the diagnoses (Kasprak, 2011). Less than two years after legislation into its first state, the pulse oximetry test has become a widely practiced test (McCullough, 2013). THE PULSE OXIMETRY TEST 7 Virginia Legislator Vetoed By Governor McDonnell The legislation in Virginia was originally vetoed by Governor McDonnell, but many parents rallied for him to rethink his decision. Around 4 out of every 1000 babies are born with a critical heart defect in Virginia. And around 300 babies are diagnosed with one every year in Virginia. Only 74 percent of babies are currently diagnosed at birth (Governor McDonnell Signs Executive Directive 4, 2012). Children’s National voiced their opinion when Governor McDonnell vetoed the original legislation. They believed that the veto hurt their chances of getting $1 million in federal funding to help with critical congenital heart defects for newborns. They were perplexed why the American Academy of Pediatrics, American College of Cardiology, the American Heart Association, and the U.S. Department of Health and Human and Human Services all supported this test, yet Governor McDonnell chose to put this legislation aside for another time (Children’s National Disappointed in Gov. Bob McDonnell, 2012). An Executive Order Governor McDonnell later implemented the executive order. "An Executive Order would put the critical congenital heart disease screening policy in place without creating any new government bodies or increasing the size of government,” according to Dr. Robert Shor, a cardiologist from Northern Virginia. The executive order has no effect on the budget, which was ideal for Governor McDonnell (VA Governor Signs Executive Order for CHD Screening). The executive order would create a workgroup which will work on a program to screen babies for critical heart defects. This workgroup would be working closely with the Virginia Department of THE PULSE OXIMETRY TEST 8 Health. They would also be working on an early intervention program which would help babies who are diagnosed with a critical congenital heart defect. Pros & Cons of the Pulse Oximetry Test The Pros The pros of the pulse oximetry test outweigh the cons. It is easier for a parent to experience coming to terms with their child having a critical congenital heart defect within the first 48 hours than having to find out that their child is turning blue at home because they have a critical heart defect. The test allows doctors to figure out what to do very early in the process. The pulse oximetry test can identify a total of 7 critical congenital heart defects (Screening for CCHDs, 2013). Prenatal ultrasounds before the pulse oximetry test became popular only helped to identify half of all congenital heart defects, which let many babies go home (Downing, Garlick, 2013). The pulse oximetry is cost effective and more accurate. The Cons Many parents worry that the test will give their baby a false positive. There have been false positives, but that’s only .14% of the cases. A way to keep false positives low is to make sure that the infant is alert according to the CDC. Doctors will check the baby in order to see why the baby didn’t pass the test (Indiana Department of Health). Unfortunately, this test doesn’t detect all forms of critical congenital defects and babies can test negative for a congenital heart defect when they have one of the rare forms that the test doesn’t detect. Parents are allowed to object to the test only for religious reasons, however. In order to claim that their religion is against the pulse oximetry test, the parents must submit the state’s THE PULSE OXIMETRY TEST 9 religious waiver form or the hospital’s form in order to not allow their child to participate in the test. No other reasons will be reviewed to why the parent doesn’t want the test for their newborn (Indiana Department of Health). Families Affected Positively By This Test Many families come to terms with the idea that having a baby look healthy doesn’t mean the baby is actually healthy. Parents are relying heavily on newborn tests because of the numerous rare disorders babies have been diagnosed with. Only recently has the pulse oximetry test become widely popular. Although parents have seen their newborns go through numerous surgeries because the pulse oximetry test detected the heart defect early in their newborn, it allows them to relax and know that their child is in good hands and being treated. Without some states implementation of the law, many newborns would pass away. Family from Connecticut One family from Connecticut benefited greatly from this test. Their baby was born in July, and their baby looked completely healthy. They were getting ready to take the infant home, when a cardiologist came and told the parents that they would have to transfer the baby to New York Presbyterian Hospital for heart surgery. Their newborn was one of the first babies who benefited from the pulse oximetry test. They didn’t even live in Connecticut, but they were lucky to find that Connecticut offered this test that was recently implemented prior to their baby’s birth. New York had not required all hospitals to have this test done on every newborn. Had they had their baby in New York, their child would’ve most likely died from a critical congenital heart defect (Grabell, 2013). THE PULSE OXIMETRY TEST 10 The Unfortunate Reality Taking a child home from the hospital with a congenital heart defect and not knowing it can actually damage the heart even more, making it even more difficult to operate on the infant. The whole point of this test is to detect the heart defect as soon as possible. One mother saw her baby turn blue within seconds while she was wiping her baby’s face. She heard a pop in the chest and saw her baby with blood coming out of its mouth. The baby went over a half hour without oxygen and went into a coma, and later died. This mother was very unfortunate to not have this pulse oximetry test to help save her daughter. The test is around $13.50 for use of equipment and the time from the nurse. There are pulse oximetry tests available at local drug stores as well; however it is better to have it done at the hospital (Grabell, 2013). Tennessee Family A newborn from Tennessee was examined by the obstetrician before and after birth. He seemed like a perfectly healthy newborn, and would have been sent home with no question had Tennessee not had the pulse oximetry test implemented. Many pediatricians find that they don’t need the pulse oximetry test because they can find physical findings that the infant has a heart defect (Hoffman, 2010). However, the physical examinations miss approximately half of all the newborns who indeed do have a critical congenital heart defect (U.S. Health & Human Services & Critical Congenital Heart Defects, 2011). The cardiologists found that he had a narrowing of a blood vessel in his body. This narrowing blood vessel would of course become even narrower over the next week or two, and eventually he would have died had he not had the test. He had surgery and the blood vessel was corrected. Vanderbilt University hospital where this baby boy was born normally sees around 12 babies go home each year with an undetected heart defect. THE PULSE OXIMETRY TEST 11 That is why they had this legislation passed in Tennessee. It can only be assumed that they die, they lapse into a coma, or it becomes very hard to operate on the infant (Saving the Life of a Tennessee Newborn, 2013). A Mother’s Movement One mother, named Crystal Darak from Wilson, North Carolina, has rallied to bring awareness to heart defects. Her child named Korah, died of a critical congenital heart defect in May of 2011. Korah had hypoplastic left heart syndrome in which it required a heart transplant. Korah was waiting for a heart transplant at the Duke University Medical Center in Durham, North Carolina, while in the PICU. Crystal Darak was an advocate for the pulse oximetry test. When Governor Pat McCroy signed into law the pulse oximetry test, she was there beside him (“Wilson Woman Crusades for Health Screening”, 2013). Pulse Oximetry Test in the UK The Study’s Results The United States is not the only country to create the pulse oximetry test for their newborns. The UK tested infants in six maternity units. They had over 20,055 newborns, and of all those newborns around 53 tested positive for a congenital heart, and 24 of those infants had a critical congenital heart defect. Only .8% of the newborns received a false positive, which is quite low considering the number or newborns they screened (Ewer, A. K., Middleton, L. J., Furmston, A. T., Bhoyar, A., Daniels, J. P., Thangaratinam, S., ... Khan, K. S, 2011). Around 1 in 3,000 babies had a false positive (Roan, 2011). According to Dr. Gerard Martin, from writer Shari Roan’s interview, the European study also showed that the babies that had a false positive also had something else going on that the doctors needed to look at. The newborns that triggered THE PULSE OXIMETRY TEST 12 this false positive might also need some type of treatment to fix anything that the pulse oximetry test might have caused to read as a positive for a congenital heart defect. Fighting for Implementation The UK is currently signing petitions in order to implement this test in all UK hospitals, for the same reasons the US is (Johnson, 2013). Their study, however, was one of the largest studies to determine the effects of the pulse oximetry test on infants, and the accuracy of the test. The United States has yet to do a huge study, but the UK has a favorable outlook of the test (Kasprak, 2011). Conclusion All babies deserve to be given a second chance in life. The pulse oximetry is able to provide families reassurance, and newborns the opportunity to get corrective surgery or some other procedure to fix their critical congenital heart defect. No parent deserves to put their newborn to rest, after seeing them struggle to live. Some parents experience grief when they find their newborn has been diagnosed with a critical congenital heart defect; however parents should find comfort in the idea that the critical heart defect was detected early. The pulse oximetry test has been found to be very accurate and it is noninvasive. Although equipment might cost a fair amount of money, the idea that the test could cost as little as $1.00 is reassuring for many advocates and parents. The switching of the sensor of the pulse oximeter to a blood pressure cuff like sensor can cut the price by roughly 90%. Overall, parents, doctors, and many state legislators have completely advocated for the implementation of the pulse oximetry test into legislation and the future for newborns is looking bright. THE PULSE OXIMETRY TEST 13 Works Cited "American Heart Association Focuses on Newborn Screenings for Congenital Heart Defects." PR Newswire 2013 feb 21: n. pag. Web. 21 Oct. 2013. <http://search.proquest.com/docview/1291081044?accountid=3785>. "Children’s National Disappointed in Gov. Bob McDonnell’s Veto of Newborn Heart Disease Screening Legislation." Children's National Medical Center. N.p., 10 Apr. 2012. Web. 6 Nov. 2013. <http://www.childrensnational.org/pressroom/newsreleases/childrensnational-disappointed-gov-bob-mcdonnell-veto-newborn-screening.aspx>. Downing, Senator, and Garlick, Representative. "Save Babies through Screening Foundation." Save Babies Through Screening Foundation Newborn Screening Information and Advocacy. N.p., 29 Jan. 2013. Web. 6 Nov. 2013. <http://www.savebabies.org/blog/2013/01/an-act-requiring-newborn-pulse-oximetryscreening-for-congenital-heart-defects/>. Ewer, Andrew K., Lee J. Middleton, Alexandra T. Furmston, Abhay Bhoyar, Jane P. Daniels, Shakila Thangaratinam, Jonathan J. Deeks, and Khalid S. Khan. "Pulse Oximetry Screening for Congenital Heart Defects in Newborn Infants (PulseOx): A Test Accuracy Study." The Lancet 378.9793 (Aug 27-Sep 2, 2011): 785-94. Web. 4 Nov. 2013. <http://search.proquest.com/docview/887130640?accountid=3785>. "Five Facts about Congenital Heart Defects." Centers for Disease Control and Prevention. N.p., 03 Jan. 2012. Web. 6 Nov. 2013. <http://www.cdc.gov/features/heartdefects/>. Fox, Chloe. "17 States Still Don't Have Legislation Requiring Pulse Oximetry." The Huffington Post. N.p., 06 Oct. 2013. Web. 6 Nov. 2013. THE PULSE OXIMETRY TEST 14 <http://www.huffingtonpost.com/2013/10/06/pulse-oximetrylegislation_n_4047325.html>. "Frequently Asked Questions." Children's National Medical Center. N.p., n.d. Web. 1 Dec. 2013. <http://www.childrensnational.org/pulseox/faq.aspx>. "Governor McDonnell Signs Executive Directive 4." M2 Presswire 2012 jun 30: n. pag. Web. 4 Nov. 2013. <http://search.proquest.com/docview/1022668730?accountid=3785>. Grabell, Michael. "The $13 Test That Saved My Baby's Life. Why Isn't It Required for Every Newborn?" ProPublica 2013 sep 21: n. pag. Web. 21 Oct. 2013. <http://search.proquest.com/docview/1434647620?accountid=3785>. Grap, Mary Jo, RN. "Pulse Oximetry." Pulse Oximetry. N.p., 2002. Web. 06 Nov. 2013. <http://ccn.aacnjournals.org/content/22/3/69.full>. Hoffman, Julien I E. "It Is Time for Routine Neonatal Screening by Pulse Oximetry." Neonatology 99.1 (Dec 2010): 1-9. Web. 21 Oct. 2013. <http://search.proquest.com/docview/821564957?accountid=3785>. Hudzinski, Nicole. "Pulse Oximetry in Wisconsin." Pulse Oximetry in Wisconsin. N.p., 3 Apr. 2013. Web. 6 Nov. 2013. <http://www.heart.org/HEARTORG/Affiliate/Pulse-Oximetryin-Wisconsin_UCM_447703_Article.jsp>. "Indiana State Department of Health." ISDH: Pulse Oximetry Newborn Screening for Critical Congenital Heart Disease (CCHD). N.p., n.d. Web. 10 Dec. 2013. <http://www.in.gov/isdh/25347.htm>. Johnson, Samantha. "Pulse Oximetry Screening for All Newborns in the UK." Government Digital Service. N.p., n.d. Web. 11 Dec. 2013. <http://epetitions.direct.gov.uk/petitions/37286>. THE PULSE OXIMETRY TEST 15 Kasprak, John. "Pulse Oximetry Screening of Newborns." Pulse Oximetry Screening of Newborns. N.p., 18 Aug. 2011. Web. 6 Nov. 2013. <http://www.cga.ct.gov/2011/rpt/2011-R-0293.htm>. Lewis, Ricki, PhD. "Pulse Oximetry Added to Newborn Screening Recommendations." Medscape Log In. N.p., 27 Sept. 2011. Web. 6 Nov. 2013. <http://www.medscape.com/viewarticle/750450>. "Living with a Heart Defect: One Family's Story." Centers for Disease Control and Prevention. N.p., 06 Feb. 2012. Web. 6 Nov. 2013. <http://www.cdc.gov/features/chdstory/>. Mccullough, Marie, and Philadelphia Inquirer. "Inexpensive Screening Saving Newborns' Lives." Orlando Sentinel 2013 aug 20: n. pag. Web. 9 Oct. 2013. <http://search.proquest.com/docview/1426256281?accountid=3785>. O'Dowd, Mary E. "Department of Health | New Jersey's First In Nation Statewide Screening Program Detects Critical Congenital Heart Defects and Other Conditions in First Nine Months." Department of Health | New Jersey's First In Nation Statewide Screening Program Detects Critical Congenital Heart Defects and Other Conditions in First Nine Months. N.p., 15 July 2013. Web. 04 Dec. 2013. <http://www.state.nj.us/health/news/2013/approved/20130715b.html>. "Screening for Critical Congenital Heart Defects." Centers for Disease Control and Prevention. N.p., 08 July 2013. Web. 4 Nov. 2013. <http://www.cdc.gov/ncbddd/pediatricgenetics/pulse.html>. "Pulse Oximetry Screening for Critical Congenital Heart Defects." Centers for Disease Control and Prevention. N.p., 23 Jan. 2012. Web. 6 Nov. 2013. <http://www.cdc.gov/features/congenitalheartdefects/>. THE PULSE OXIMETRY TEST 16 "Pulse Oximetry Screening Works to save Life of Tennessee Newborn." Targeted News Service 2013 mar 06: n. pag. Web. 21 Oct. 2013. <http://search.proquest.com/docview/1314877255?accountid=3785>. Rattue, Grace. "Pulse Oximetry Detects Congenital Heart Disease in Newborns, Should Be Included in Routine Care." Medical News Today. N.p., 4 Aug. 2011. Web. 6 Nov. 2013. <http://www.medicalnewstoday.com/articles/232292.php>. Roan, Shari. "Testing Infants for Unhealthy Hearts." Los Angeles Times 2011 aug 22: AA.1. Web. 7 Oct. 2013. <http://sks.sirs.com>. "Save Babies through Screening Foundation." Save Babies Through Screening Foundation Newborn Screening Information and Advocacy. N.p., 14 June 2012. Web. 6 Nov. 2013. <http://www.savebabies.org/blog/2012/06/pulse-ox-screening-saves-babies-lives/>. Schultz, Amy. "Pulse Oximetry Screening of Newborns: Recommendations and Training Resources." Seattle Children's Hospital. N.p., n.d. Web. 6 Nov. 2013. <http://www.seattlechildrens.org/healthcare-professionals/gateway/pulse-oximetryscreening-newborns/>. "U.S. Health & Human Services Makes Critical Congenital Heart Defect Screening Using Motion-tolerant Pulse Oximetry a Nationwide Newborn Screening Standard." PR Newswire Sept.-Oct. 2011: n. pag. Web. 4 Nov. 2013. <http://search.proquest.com/docview/896532260?accountid=3785>. "VA Governor Signs Executive Order to Implement Congenital Heart Disease Screening Legislation." CardioSource. N.p., n.d. Web. 6 Nov. 2013. <http://www.cardiosource.org/en/Advocacy/Issues/Prevention-And Research/LegislativePolicy-Information/VALaw.aspx>. THE PULSE OXIMETRY TEST 17 "Wilson Woman Crusades for Health Screening." The Wilson Daily Times (Wilson, NC) 09 May 2013: n. pag. Web. 7 Oct. 2013. <http://ic.galegroup.com/ic/ovic/NewsDetailsPage/NewsDetailsWindow?query=&prodId =OVIC&displayGroupName=News&limiter=&source=&disableHighlighting=false&dis playGroups=&sortBy=&search_within_results=&action=2&catId=&activityType=&doc umentId=GALE%7CA329149037&userGroupName=cant48040&jsid=a343479702eecd0 9155d71b8ba4c8f7c>.