The day after Wren Patterson was born in October, doctors were concerned about a heart murmur and her low blood oxygenation. An echocardiogram at Aultman Hospital in Canton showed the reason. Wren had a congenital heart defect called tetralogy of Fallot, characterized by 4 malformations that robbed her of adequate blood flow to the lungs for oxygenation.
Ashley and Darren Patterson of Millersburg had just learned after Wren’s birth that their baby daughter had Down syndrome. Now they were processing the news that she had a life-threatening heart condition.
“It was a hard pill to swallow,” Ashley said. “We just had a baby and didn’t think anything was wrong with her.”
Next stop for Wren, Ashley and Darren was Akron Children’s Hospital Neonatal Intensive Care. Wren would need open-heart surgery to patch a hole between her ventricles, the lower chambers of the heart, and improve blood flow through the pulmonary valves and arteries.
She had the surgery at 30 days old. Akron Children’s Heart Center cardiologist Dr. Stephen Manu said babies with the condition usually undergo surgery at 4 to 6 months. “Hers was very early because she wasn’t doing well. She was frequently turning blue from decreased blood flow to her lungs, despite the use of medications.”
Tetralogy of Fallot repairs were among the earliest surgeries ever done for complex congenital heart defects. Today, many adults who had the surgery as babies are doing just fine. Ashley and Darren were heartened to hear that.
“She’s been a whole new baby ever since. She has no complications and she’s strong as she can be,” Ashley said. “Before the surgery, she was sleeping all the time. Afterward, she was just radiant. She’s super happy. She’s talking a lot and her smile is infectious.”
Dr. Manu said, while a rare condition, tetralogy of Fallot is a primary cause of blue baby syndrome.
“Fortunately, the long-term prognosis after surgical repair is excellent,” he said “Once the hole is patched and the pulmonary arteries have been enlarged, these patients usually do very well. Overall, they do fantastic.”
After repair, many patients are left with a leaky pulmonary valve. They must be watched long-term for potential of that problem and also of pulmonary arteries that may become too small over time, he said.
The Patterson family will be honored at the American Heart Association’s Akron Heart Ball on April 25. Ashley said she hopes to let other families of babies with congenital heart defects know they aren’t alone.
“I just want her story told and maybe help another family get through what they’re going through,” she said.
The young couple, who also have a 3-year-old son, Deagan, feel forever changed by the experience. Ashley said it made her appreciate what she has, even when things go wrong.
“It has been a rollercoaster ride,” Darren said. “It gives you a whole new outlook on everything.”
To learn more about Akron Children’s Hospital Heart Center, click here or call (330) 543-8521