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Heart Heroes

Family of local boy with heart condition urges state law on screening newborns

February 24, 2013
By BILL ACKERBAUER , The Leader Herald

JOHNSTOWN - Romping around the living room with his baby brother, Tracker Wager is as playful and silly as any typical 3-year-old.

But if you ask him to show you his "battle scar," he'll lift up his sweater to show a visible reminder of the surgery that kept his heart pumping and probably saved his life.

February is American Heart Month, and Tracker has been wearing red as he plays the role of "Heart Hero," helping his parents, Emily and T.J. Wager of Johnstown, to raise awareness of congenital heart defects, in support of the American Heart Association and other advocacy organizations.

Article Photos

Three-year-old Tracker Wager of Johnstown laughs during an interview with his family this week at their Johnstown home. (The Leader-Herald/Bill Ackerbauer)

"When he was first born, they didn't hear anything," his mother said. But when he was 4 months old, Tracker's doctors detected a heart murmur.

"Tests showed everything was fine and it was an 'innocent murmur,'" Emily Wager said, but later the doctors found the murmur was growing "louder and more harsh sounding."

Tracker's parents credit Dr. Emily Etzkorn of Amsterdam, his local physician, for pushing to get his heart carefully tested, and that testing may have saved his life.

Fact Box

For more information about efforts to support pulse oximetry screening legislation, see the Facebook page "Check Their Hearts: Support Pulse Oximetry Screening for Heart Defects" or visit these websites:

http://pulseoxadvocacy.com

http://babyheartscreening.com

For more information about Anna King, visit the "Humor Heals the Heart:?The Anna King Project" website at:?

http://humorhealstheheart.org

"We owe a lot to her," Emily said.

He was diagnosed with a congenital heart condition called subaortic stenosis, a blockage of part of his heart that restricted the flow of blood to the aorta.

When Tracker was 16 months old, Albany-based cardiac surgeon Dr. Neil S. Devejian performed surgery, correcting the blockage. But his doctors, including pediatric cardiologist Dr. Robin Doyle, determined he also has an aortic insufficiency - a leak that can't easily be repaired. Now, they are monitoring his condition, which might require another surgery and a valve replacement.

Because of his limited heart function, Tracker doesn't always have as much endurance as his friends.

"He'll say, 'I need to take a break,'" his mother said. "If he gets tired or gets out of breath, he'll tell you."

Admitting she's naturally a bit of a worrier, Emily says balancing her concerns about her son's condition with his freedom to "just be a kid" is a significant challenge.

"Managing both of those is kind of hard for me," she said.

As part of this month's hearth-health advocacy efforts, the Wagers are helping to urge the state Legislature to pass a bill that would require pulse oximetry screening for newborns.

"Pulse oximetry screening is a simple bedside test to determine the amount of oxygen in a baby's blood and the baby's pulse rate," according to the U.S. Centers for Disease Control. Low levels of oxygen in the blood can indicate the possibility of congenital heart defects, which account for 24 percent of infant deaths in the United States.

The U.S. Department of Health and Human services has recommended pulse oximetry screening for all newborn babies, but not every state requires it by law. A bill to do just that has been under consideration at the committee level in the New York State Legislature. (In the state Senate, the bill is labeled S6726-2011; in the Assembly, it is A7941-2011.)

The Wagers say Tracker was lucky to have had his condition diagnosed at 4 months, but it might have been detected sooner with earlier testing, and they feel it's important that all newborn babies get the benefit of pulse oximetry screening.

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Waiting for 'The Day'

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Although she no longer lives in this area, Anna King remains another hero in the hearts of many Fulton County residents.

The 13-year-old and her family moved away from their home in Mayfield to The Woodlands, Texas, in 2011, around the time she was diagnosed with dilated cardiomyopathy - a rare condition that severely limits her heart function. Though she has been waiting months for an urgently needed heart transplant, she and her family remain upbeat and optimistic.

"Anna is hanging in there," her mother, Pam King, told The Leader-Herald this week. "She has been on the transplant waiting list since May 11, 2012. We truly didn't think we'd have to wait this long, but we also didn't anticipate that Anna would stay as strong and stable as she has, so we can't complain."

Anna has to be tutored at home - attending school is too risky, because she needs to avoid germs and illness at all costs.

"We need to try to keep her as healthy as possible because any infection at all will keep her from being able to accept a transplant," Pam King said.

The King family has benefitted from tremendous support from their new community and from their friends in Mayfield, she said. McCullough Junior High School, where Anna hopes to rejoin her classmates someday soon, recently did a "Change of Heart" coin drive for her and raised more than $2,000. The family's financial situation has been challenging since the Mayfield Central School District eliminated Pam King's teaching job in budget cuts, she said.

"What would otherwise be a nightmare has been made bearable by the pure generosity of friends, family and complete strangers," she said.

Anna has become a bit of a celebrity, making appearances on local TV news programs in Texas and working as a "consultant" for the Life is Good company.

"She handles herself with such grace and is wonderful in interviews, so people are very drawn to her," Pam said. Anna also has been asked to be the keynote speaker at the American Heart Association's Go Red Luncheon in The Woodlands in May.

While she awaits word that a new heart is available for her, Anna keeps busy with her schoolwork and hobbies: She plays guitar, takes golf lessons and recently tried yoga for the first time.

"She's finding ways to pass the time while we wait," Pam said. "Every day we pray that today will be the day."

Features editor Bill Ackerbauer can be reached by email at features@leaderherald.com.

 
 

 

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