Salisbury family happy with new law on infant testing

  • Posted: Wednesday, May 15, 2013 10:29 a.m.
    UPDATED: Wednesday, May 15, 2013 10:30 a.m.
Submitted photo. Stephanie, Renna and Joel Linn of Salisbury helped advocate for a bill that would require newborns to be screened for oxygen levels in their blood. Low oxygen can signal congenital heart defects.
Submitted photo. Stephanie, Renna and Joel Linn of Salisbury helped advocate for a bill that would require newborns to be screened for oxygen levels in their blood. Low oxygen can signal congenital heart defects.

Gov. Pat McCrory signed legislation requiring pulse oximetry be added to North Carolina’s newborn screening panel on May 8. Pulse oximetry screening, in conjunction with standard screening methods, greatly improves the likelihood of detecting life-threatening heart defects in infants. North Carolina is one of only twelve states to adopt the legislation to ensure babies born with heart defects are screened and receive appropriate care.

Joel and Stephanie Linn of Salisbury, parents of Renna, a 5-year-old Tetralogy of Fallot survivor, have been outspoken advocates of the legislation. Tetralogy of Fallot is a congenital heart defect that results in low oxygen in the body.

“We are thrilled that N.C. has embraced and recognized the sheer importance of the Pulse Ox Bill. New parents will now have peace of mind when they are discharged that this simple screening is now a part of routine care, thus eliminating potential dangers later,” said Joel Linn. “We are so appreciative of Senator Andrew Brock, Congressman Jim Fulghum, Governor McCrory, and the entire N.C. legislative body for ensuring this quality care initiative was implemented into practice for our newborns.”

“I feel so honored and proud to have helped make a change for every future newborn child in N.C. My goal in advocating for the Pulse Ox mandate was to be a voice for all the children born in N.C. and their families and ensuring that anything and everything is being done to detect life-threatening issues earlier. We may not be able to change the past. However, moving forward, the impact that pulse oximetry testing will make on newborns will be tremendous,” says Stephanie Hallyburton-Linn, Renna’s mother.

The Governor signed Senate Bill 98 into law surrounded by bill sponsors, parents and children affected by congenital heart defects such as Grace Sanchez of Durham.

Pulse oximetry screening is a non-invasive, simple test that measures the level of oxygen saturation in the blood and indicates how well the heart is functioning.

Congenital heart defects account for 24 percent of infant deaths due to birth defects and more than 1,400 babies with CCHD do not live to celebrate their first birthday. In the United States, approximately 4,800 babies born every year have one of seven critical congenital heart defects. Infants with one of these CCHDs are at significant risk for death or disability if not diagnosed and treated soon after birth.

Parents of children with congenital heart defects, such as Carolina Panther Greg Olsen, the American Heart Association and their partners, advocated for the pulse oximetry bill through a “You’re the Cure for Healthy Babies” campaign. Olsen and supporters from across the state wrote Teddy Bear postcards addressed to Gov. McCrory championing the bill.

“I am overwhelmed with joy that a simple piece of legislation can have such a positive impact on so many lives,” said bill co-sponsor Sen. Andrew Brock. “This procedure will save countless babies.”

Bill sponsors included co-sponsors Brock (R), Sen. Louis Pate(R) and Sen. Josh Stein (D) along with Speaker Pro Tem Rep. Paul Stam, Rep. Jim Fulghum (R) and Rep. Mark Hollo (R).

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