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Corbin's Legacy Turned into Law

  • Last week, we blogged about RN Angela Wittenauer, who gave us a coordinator’s perspective on newborn screening. This week, we bring you the perspective of an advocate who turned loss into impactful legislation. This is Ruth and Corbin’s story:

    The Caruthers family welcomed Corbin Walker into the world on February 20, 2011, just 364 days after his big brother. Like his brother, Corbin appeared pink and healthy at birth. At only nine days old, however, he had to undergo surgery for serious heart defects, including an obstructed aortic arch. Two more heart surgeries and three months later, Corbin passed away.

    While Corbin spent those weeks fighting for his life—beating many odds that his surgeons thought insurmountable, his parents spent the time waiting. “We were always waiting,” said his mother Ruth Caruthers. “Waiting for him to get better, waiting for surgery dates, waiting for doctors to update us.”

    After Corbin’s death, Ruth Caruthers—tired of the waiting game and determined to work good out of the loss of her precious little fighter—lost no time in finding ways to raise awareness about critical congenital heart disease (CCHD): the most prevalent birth defect and a condition in which early detection is imperative.

    “A couple months after Corbin’s funeral, I looked at the pulse ox laws in Indiana and New Jersey and thought, ‘I want to do that for West Virginia,’” said Caruthers. With memories of Corbin inspiring and fueling her passion for newborn screening awareness, Caruthers started working with other advocates in her state, various support groups, and the American Heart Association to spread word about pulse oximetry, a non-invasive test that can help detect CCHD by measuring how much oxygen is in the blood before a baby leaves the newborn nursery.

    Caruthers and her team of ‘Heart Moms’ introduced Corbin’s Bill, which would require that all babies born in the state receive pulse ox testing, to the West Virginia legislature in January 2012. Utilizing social media and the American Heart Association’s You’re the Cure network, the team rallied statewide support—support that ensured the bill passed a mere three months later.

    “We were expecting the legislating process to drag on for three to five years, but everyone that supported us was wonderful,” said a surprised, grateful Caruthers. “During the process, through You’re the Cure, 4,000 emails were sent to the legislature on behalf of our bill—it was perfect and shocking.”

    Caruthers expected debate over money and resources, but the legislature was unanimously willing to accept the about $5 per newborn price tag that the pulse ox test carries.

    The legislature provided for a one-year implementation window, and West Virginia hospitals are now well on their way to universal pulse oximetry testing as part of the newborn screening panel. “The hospital in which Corbin was born has started training nurses, and soon, every baby born there will be pulse ox tested!” exclaimed Caruthers.

    Thanks to Caruthers and her team’s tireless efforts at promoting early detection of CCHD--even in babies that show no outward signs of heart defects, countless individuals born with CCHD will be able to lead longer, healthier lives. That also means fewer parents will have to go through the heart-wrenching ordeal of hearing a surprise CHD diagnosis.

    Her mission, however, has not stopped with the bill’s passage. “Less than 50 percent of all states have pulse ox screening laws. It’s better than only two states a year ago, but we’ve still got a long way to go,” she said. “Looking back, Corbin did breathe heavily and his jaundice was extreme, but he looked mostly normal and I would never have suspected CCHD at the time. It’s awareness that needs to happen.”

    Caruthers, who was named one of the American Heart Association’s outstanding volunteers, is currently working to get posters detailing the pulse ox test and heart defects put up in every West Virginia WIC office. To keep up with her work and to learn more about Corbin’s life, visit The Pearl in the Oyster: Corbin’s story.

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