As Shannon and Kendall Cogan prepared for the arrival of their twin boys, a congenital heart defect never entered into their minds.
Shannon’s pregnancy had gone well and the fraternal twins were scheduled for delivery by cesarean section at 38 weeks. But when Colt and Cade were born the morning of Dec. 22, 2008, it was clear something was wrong.
Colt’s coloring had a bluish tint compared to his brother Cade, who was younger by four minutes. A nurse performed a pulse oximetry screening — a noninvasive, potentially lifesaving diagnostic test mandated by a growing number of states for all newborns — to confirm that oxygen levels in Colt’s blood were below normal.
The medical team at Holtz Children’s Hospital in Miami left Cade with his parents and whisked Colt away for more testing.
More than 16 hours later at about midnight, the hospital cardiologist returned to deliver devastating news: Colt had total anomalous pulmonary venous return, a critical congenital heart defect in which the veins that bring blood back from the lungs do not connect to the left upper chamber of the heart as they should.
Colt would need open-heart surgery to survive.
“He started drawing a picture of a heart to explain how it normally operates and why Colt’s wasn’t working right,” Shannon said. “We had no experience with heart defects and hadn’t ever given it much thought before.”
Surgery in the first days of life
Congenital heart defects are the most common birth defect, affecting eight out of 1,000 births, or more than 40,000 babies each year. As the leading cause of death in infants with birth defects, CHDs range in severity from simple holes or murmurs to severe malformations, such as the complete absence of one or more heart chambers or valves.
Some heart defects may never cause symptoms. Others, like the one Colt had, require detection and intervention within the first days of life.
A day later, surgeons repaired Colt’s walnut-sized heart by connecting thread-sized pulmonary veins to the left atrium.
Colt’s recovery was bumpy, as doctors struggled to keep fluid from building up in his lungs. When he was three and a half weeks old, Colt’s heart stopped beating when a nurse changed the catheter used to deliver his medication. Shannon was at his side, trying to soothe him by singing “Twinkle, Twinkle Little Star.”
“All of a sudden, he opened his eyes and then flat-lined,” Shannon said. “I’ll never forget seeing that look on his face.”
Doctors reopened his chest and manually pumped his heart. It took 20 minutes for doctors to get Colt’s heart pumping on its own. Any brain damage from the cardiac arrest may not be evident for several years, doctors told the Cogans.
Colt was placed on a machine that did the work of his weakened heart and lungs as he recovered. Doctors told Shannon that her son may have suffered a significant brain injury.
“I still get anxious when I talk about it,” she said.
After another month in the hospital, Colt came home, still fragile and with a feeding tube in his nose. In addition to his heart condition, Colt also had a cleft palate.
Anything to help their son
Colt began physical, occupational and feeding therapy a week after returning home.
Because Colt had a twin brother, Shannon could quickly pick up on differences in their development. That vigilance allowed her to recognize Colt’s hearing loss, which required hearing aids soon after he turned 1.
“We did whatever we could for him,” Shannon said. “I wanted to be aggressive rather than just wait and see what his quality of life would be.”
With the help of therapy, Colt reached important developmental milestones, like walking at 22 months.
“It was a huge day for us,” Shannon said. “It meant he’d be able to do a lot of physical things we weren’t sure he’d ever do.”
Colt, now 6, is a kindergartener at Heuser Hearing and Language Academy in Louisville, Kentucky, where the family moved in 2013. He continues with physical, occupational and speech therapy, in addition to a therapeutic treatment with horses called hippotherapy.
Though surgery repaired Colt’s heart, the cardiac arrest injured his developing brain, causing learning disabilities. Speech is his biggest hurdle, as he often struggles to get his feelings and desires across.
The Cogans found support through Brave Hearts, a group for families with children with congenital heart defects at Kosair Children’s Hospital in Louisville.
The family has also become strong supporters of the American Heart Association. Shannon, who works as a television news anchor, emceed last year’s Kentuckiana Heart Walk in Louisville, which drew 10,000 people and raised more than $910,000.
Colt and Cade joined Shannon on stage to give the walkers a send-off. Colt is slated to be the “king” of the 2015 event.
“I’m just so grateful that Colt is alive and he can laugh and run and play with his brother,” Shannon said. “He’s just a little clown and loves to make people laugh.”
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Photos courtesy of Shannon Cogan