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Young heart patient lives a normal life

Jay Hamburger OF THE RECORD STAFF
Three-year-old Cole Simon had open-heart surgery when he was 12 hours old and has lived a normal life since. His mother, Kim, with the boy's father, Kevin, said Cole is now "doing great." Grayson West/Park Record

When he was just 12 hours old, when babies are still shocked to be out of their mother’s womb, Cole Simon was put to sleep with anesthesia, had his chest cut open and doctors stopped his tiny heart to perform life-saving cardiac surgery

Cole, who is now three years old and living a normal life, was born with what doctors describe as the transposition of the body’s great arteries. His pulmonary artery and his aorta were reversed at birth, a defect his heart doctor said is common in babies born with deformed hearts.

Cole’s mother, Kim Simon, remembers the boy having a bluish coloring when he was born, a sign that he had a heart problem, and that he did not cry in the early hours of his life.

He was born at about 4:15 a.m. on Nov. 18, 2002 at Cottonwood Hospital and was taken by emergency helicopter to Primary Children’s Medical Center about three hours later. By 3:30 p.m., Cole was in the operating room.

"He was quiet. He might have made a whimper," Simon, a nurse at Primary Children’s, said, remembering crying as Cole was loaded onto the helicopter, his blood pressure and oxygen levels low.

She was not able to hold her child for two weeks after his surgery.

Tuesday marked the end of Congenital Heart Defect Awareness Week, to bring attention to what organizers describe as the most common birth defect. The Congenital Heart Information Network in suburban Philadelphia sponsored the week and says 1 percent of children in the U.S. are born with a heart defect, about 40,000 each year.

Still, Cole’s heart problem stunned his family.

"You just never expect that," Simon said.

Collin Cowley, a heart doctor at Primary Children’s, treated Cole before Dr. John Hawkins operated and said the child would have died within several hours without the surgery.

"For him, it was life threatening," Cowley said.

In a normal person, the blood flows from the body to the heart’s right side and is then pumped to the lungs for oxygen. The blood then flows to the left side of the heart and is pumped out to the rest of the body.

In Cole’s heart, the blood did not receive oxygen before being pumped out of the heart, Cowley said.

He expects that the rest of Cole’s life will be similar to that of other people.

"These kids can have absolutely normal lives," he said.

Mona Barmash, the president of the Yardley, Pa.-based network, said newborns are not normally checked for heart defects. Mothers and babies are discharged from hospitals early believing that the child is healthy but the babies then have trouble breathing and display a bluish coloring, she said.

Barmash’s 23-year-old son has had four heart surgeries, she said.

Barmash said 33 or 34 states passed proclamations for the awareness week. More than 100 events were scheduled in conjunction with the week but she was not aware of any in Utah.

"Valentine’s Day is the perfect time to bring families, health professionals and local organizations together, and to draw attention to the needs of the congenital heart community," she said in a prepared statement. "For parents and families of kids and adults with heart defects, February 14 means hope and remembrance."

Cole’s mother wants to press the Utah State Legislature in 2007 to require that the oxygen levels in newborns are checked. That, she said, can indicate whether a baby’s heart is deformed even if the newborn looks healthy.

She said some babies are not diagnosed until a few days after they are born and other people do not learn of their condition until they are older, when they may experience shortness of breath when they are playing sports.

Cole, she said, now is "doing great" although his pulmonary artery is narrow compared to a normal one. He goes to a heart doctor each year for checkups.

"He is totally, perfectly normal," she said. "He runs. He plays. He takes gymnastics."


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