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Congenital Heart Defect Awareness Week

By the time you leave the delivery room, you’ll feel like you and your baby have been through every test in the book. But there’s one test that might be missing: the pulse oximetry test, or pulse ox for short. This easy and painless procedure is a simple way to help determine if your baby...

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By the time you leave the delivery room, you’ll feel like you and your baby have been through every test in the book. But there’s one test that might be missing: the pulse oximetry test, or pulse ox for short. This easy and painless procedure is a simple way to help determine if your baby has a heart defect, and it’s missing from the newborn screening panel in most of the country.
Congenital heart defects, or CHD, are the most common birth defect in children, affecting 1 in every 100 babies and over 1 million babies worldwide each year. But despite the prevalence of heart defects, the pulse ox test is not mandatory in most states: only seven have passed legislation requiring that newborns be given the test, meaning that many heart conditions go undetected. The first 24 to 48 hours of a baby’s life are critical for the treatment of congenital heart defects, as many types of treatment or heart repair must be performed immediately. Delayed or late diagnosis and treatment could result in neurological injury, cardiogenic shock or even death. Since there are often no outward symptoms of the problem, many babies with CHD are given a clean bill of health and sent home, only to find out too late that there really is a problem.
That’s exactly what happened to West Virginia mom Ruth Caruthers. Her second child, Corbin, was actually given the green light to go home before she was, but was back in the hospital for open heart surgery just 6 days later. Unfortunately, he didn’t make it; after putting up a good fight, Corbin passed away at just 3 months old. If Corbin’s problems had been identified earlier, there’s a chance the surgeries would have been more successful.
In honor of her son, Caruthers has begun campaigning for the pulse ox screening to become mandatory for all newborn babies. “Pulse ox does not detect 100% of heart defects, but it certainly is saving lives every day through the amount of CHDs it is catching,” she says. “Every life saved makes it worth it.” Thanks to her efforts, a bill requiring the test, known as Corbin’s Bill, has recently become official state law in West Virginia.
The test, in addition to being quick and painless, is also incredibly cheap. “The test costs $5-10, and is available at most hospitals,” says Caruthers. “Insurance will [usually] cover it, and in states where it has become part of the newborn screening panel, it is included in that funding.” The test measures the level of oxygen in the baby’s blood, and consists of simply attaching a strip, similar to a disposable bandage, to the baby’s foot. The strip contains a small red light, which sends a pulse of light into the foot. The mother can hold her baby throughout the entire process, and it takes only a few minutes.
There is no known argument against the use of the pulse ox test: instead, Caruthers believes that it isn’t mandatory simply because those who make the laws don’t know about it. “I believe it’s simply because not everyone knows how common CHD is or how pulse ox can detect it,” she says. “It’s not for a lack of caring, but more a lack of awareness.” Now that she’s been successful in her home state, Caruthers is rallying support for the cause in the rest of the country. “These states need to gain as much support as possible,” she explains. “West Virginia passed our law because our legislators received almost 400 emails in one day. That kind of support is what told them this bill is important to residents.”
Many states have growing movements supporting making the test mandatory. “I want every parent to ask about the pulse ox test when their child is born,” says Caruthers. “I aim for knowledge and education about pulse ox and CHD.” Her goal is to make the test mandatory everywhere, so that no baby will go undiagnosed. “I hope no one has to know how it feels to get that CHD diagnosis, but at the same time, I want every parent to know about CHD so they can be informed about what they should do next in case that does happen.”
You can help save lives! Check here to see if your state has passed a bill. If not, visit Pulse Ox Advocacy to find advocates in your area. Caruthers also recommends searching Facebook for the phrase “pulse ox” and the name of your state, as many states now have
 
pages for the movement. More information about the test can be foundhere, more about heart defects can be found here, and Caruthers’ story can be found here.
Most importantly, contact your state legislators and let them know you support making the pulse oximetry test mandatory!

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