Tetralogy of Fallot and Pulmonary Atresia: Dayla Porter is "The Miracle Kid"
As printed in the April 2003 edition of Leaps and Bounds.
Shortly after birth, Dayla Porter was diagnosed with two serious heart problems: tetralogy of Fallot and pulmonary atresia. At six days old, she had surgery to allow more blood to flow to her lungs. At age 1, she underwent complex open heart surgery. Today, at age 9, Dayla is doing well and continues to earn her nickname, "The Miracle Kid."
Editor's Note: On May 5, 2003, Dayla received a heart transplant and is doing well.
Dayla is supported by her parents, Lori and David Porter, shown with her at the Ronald McDonald House. At 9 years old, Dayla "Prove 'em Wrong" Porter has fought hard for the nickname she's earned at Cincinnati Children's Hospital Medical Center. As she awaits the heart transplant that will save her life, this spunky bundle of energy plans to live up to her parents' other nickname for her, "The Miracle Kid."
"Dayla's been so sick so many times, but she's proved the predictions wrong in so many ways," says her mother, Lori. Seconds after her newborn infant was laid on her stomach, Lori noticed that Dayla wasn't breathing. "We got two photos of her, then she was transferred to Cincinnati Children's right away," Lori remembers.
The baby was diagnosed with two serious heart problems: tetralogy of Fallot -- four related heart defects that commonly occur together -- and pulmonary atresia, one of the heart problems labeled "blue baby syndrome." Together, these defects limit blood flow to the lungs, making breathing extremely difficult.
At six days old, Dayla had surgery to allow more blood to flow to her lungs. Her early months proved challenging, as she landed back in the hospital with more respiratory problems, then spent four months on oxygen and a feeding tube.
When she reached her first birthday, Dayla underwent complex open heart surgery to reconstruct her young heart. Twelve hours after surgery, her heart stopped beating and she was rushed to emergency surgery.
The Miraculous Recovery of a Child With Serious Heart Defects
"She had significant brain damage, and she became blind and deaf. We were devastated," Lori says. To sustain her life, Dayla was placed on ECMO (extracorporeal membrane oxygenation), a modified form of heart-lung bypass that takes over the heart and lung's functions when they fail.
Yet two months later, with Dayla still at Cincinnati Children's in the stepdown unit, Lori and her husband David witnessed what they considered a miracle. "She started seeing and hearing again. We couldn't believe it! Later, we would cry when we'd see her bending down to pick up a tiny piece of lint on the floor," Lori remembers.
Throughout her childhood, Dayla has battled pneumonia and other respiratory illnesses, and depended on medications to strengthen her heart. "Her growth has been very slow -- she's barely on the growth chart," says David. "Because of the condition of her heart, we knew that eventually she would need a valve replacement."
Shocking News: My Child Needs A Heart Transplant
When Dayla became ill last August, the Porters spent three worried days as doctors diagnosed the problem. "I prayed all night Monday that God would keep her until we could get her the care she needed.
On Tuesday morning, we called Cincinnati Children's and found out she needed a heart transplant. Her heart had worked so hard that it was wearing out, so there was no use replacing just the valve. We brought her right to The Heart Center at Cincinnati Children's," Lori says.
The next day, Dayla began taking the drug milrinone intravenously to strengthen her heart's function. "Milrinone supports Dayla's heart and enables her to stay at the Ronald McDonald House, rather than in the hospital, so she has better quality of life while she waits for a new heart," explains pediatric cardiologist and transplant team member Robert Spicer, MD. Dayla was hospitalized for two months. As the first patient to be released from Cincinnati Children's while on milrinone, she visits The Heart Center's clinic each week for a check-up. And the transplant team is never more than a phone call away.
"We've been waiting for the perfect match since August. We've had such good care at Cincinnati Children's from all the doctors, the nurses, the child life specialists, and Karen Uzark, the heart transplant coordinator. Now we're with the transplant team, and they're all wonderful," Lori says.
The Ronald McDonald House: A Home Away from Home
The Porters are grateful that they've found an affordable home away from their Adams County, Ohio, home at the Ronald McDonald House next to Cincinnati Children's. "When we got here, Dayla said, 'This is a mansion!'" Lori recalls. She and Dayla stay around the clock; Dayla keeps up with her third-grade schoolwork with the facility's on-site teacher.
David commutes from the residence to his job in Wilmington, returning each evening. Dayla's 12-year-old brother, Derick, lives with grandparents during the week, then joins his family on weekends.
"When you get news like this, your heart drops to your toes. You learn to take one day at a time, and you're thankful when Dayla wakes up in the morning. She hasn't felt this good in years, thanks to the medications she's on now. But she doesn't give up, even when she's sick," Lori says.
"Most calls for transplants come at night, so it's hard to go to bed. You want it to happen but you're scared," David says. "Dayla realizes what needs to be done and she accepts it. She wants to get her new heart so she can go home. She's so resilient, we believe her when she tells us she's going to be just fine."
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