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Child’s heart defect leaves parents on an emotional roller coaster

Copyright © 2019 Albuquerque Journal

Shock, fear and anxiety overwhelmed Tim and Kelsey Hanks of Los Lunas when they learned their baby daughter’s heart murmur was an indication of a potentially life-threatening defect.

Two-year-old Peyton Hanks was born with a congenital heart defect involving the narrowing of the artery responsible for blood flow to the body. The surgery to repair the aorta was successful. (Adolphe Pierre-Louis/Albuquerque Journal)

Peyton, their fourth child, was born with coarctation of the aorta, a narrowing of the artery responsible for blood flow to the body.

“We were devastated,” Tim Hanks said.

Kelsey Hanks said their three older children were born healthy and there had been no indication of a problem during pregnancy or the delivery.

At first, staff at Presbyterian Hospital Downtown thought the baby might be alright without intervention. But when they brought little Peyton in for a checkup at 3 weeks, she was rushed to the pediatric intensive care unit for surgery.

Those first weeks were an emotional roller coaster for the family, Tim Hanks said. They were grateful for the support they received from hospital staff.

“It was like one of those things that happen to other people,” he said. “But we found out so many kids have gone through this. It opened up a whole new world for us.”

The surgery to repair the aorta was successful. Peyton is now a highly active 2-year-old. During a recent visit in the hospital playroom, she was busy riding a rocking horse and bouncing balls around.

Congenital heart defects are the most common type of birth defect, occurring in about 1 percent of the babies born in the U.S. each year, according to the American Academy of Pediatrics.

Peyton Hanks plays foosball with Presbyterian Hospital Heart surgeon William Stein. (Adolphe Pierre Louis/Albuquerque Journal)

Among those defects, narrowing of the aorta is one of those more commonly seen, said Dr. William Stein, pediatric cardiothoracic surgeon with Presbyterian Heart and Cardio Vascular Care. He said doctors at Presbyterian perform roughly 10-15 surgeries each year to correct this problem.

Operating on a vessel 4 millimeters in diameter is also one of the more challenging surgeries, according to Stein. Surgeons must clamp off the vessel during the operation; this means they must work quickly to avoid damage to vital organs from lack of blood flow. However, working too rapidly can put the delicate heart tissue at risk.

“It’s like sewing wet tissue paper back together. It doesn’t tolerate lots of mistakes,” Stein said.

About 10 percent of infants who have the surgery may experience a re-narrowing of the aorta as they grow due to scarring. This condition can usually be treated with a minimally invasive procedure, he said.

Two-year-old Peyton Hanks enjoys the Presbyterian Hospital play room with her siblings Austin Hanks, 5, left, and Brooklyn Hanks, 7, during a recent visit. (Adolphe Pierre-Louis/Albuquerque Journal)

During their ordeal, Tim and Kelsey Hanks learned of an organization that provides support for families with a child born with a congenital heart defect. Leslee Schneider and Brittany Behenna Griffith, who started Lexiam Heart Foundation about a year ago, both gave birth to babies with heart defects.

“We wanted to create a foundation to connect families going through the same issues,” Schneider said.

Schneider’s daughter was born with hypoplastic left heart syndrome, a condition where the left side of the heart was underdeveloped. Her child had three surgeries before her fourth birthday, requiring the family to travel to Denver.

The foundation raises money to provide help to families who have to travel. They give gas cards, gift cards for restaurants or help with airline tickets. They also send memorial gifts to families who lose children.

Lexiam will be holding “paint and sip” fundraising events in five New Mexico communities to raise awareness about congenital heart defects. The Albuquerque event is on Feb. 7. Details and tickets are available on the Lexiam Heart Foundation Facebook page.

Additional information about how to donate or to request services from Lexiam Foundation is available on the website: www.LexiamHeartFoundation.org.

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