Five-year-old Alexa Lebens of Port Townsend may not have all the powers of her favorite super-heroes, but in her family’s eyes, none could be more brave or more loved. No matter what she’s doing… helping in the kitchen, swimming, painting, or running beside her dad as he bicycles… Alexa exudes energy, radiates happiness, and revels in a healthy heart.
But it hasn’t always been this way. She bears on her body the marks of a survivor.
“They’re beautiful scars,” said her mother, Deborah Ezell. “And she’s proud of them.” For Ezell and Alexa’s father, Dean Lebens, the scars are really part of the gift: “She was incomplete when she came to us, but now she’s whole.”
Diagnosed at birth with a heart murmur, worry turned to fear for Alexa’s parents when tests showed that she had a “tricuspid atresia,” a rare congenital heart defect in which the tricuspid valve between her right atrium and right ventricle was missing.
Without the valve, venous (bluish) blood mixed with oxygen-rich (red) blood from the lungs, resulting in poor oxygenation, low energy, and blue skin tone. Without surgery, Alexa would not live through infancy.
At three weeks of age, doctors at Children’s Hospital in Seattle took an artery from her tiny right arm and attached it to her pulmonary artery, thereby increasing the oxygen to her bloodstream.
Even with the shunt, however, Alexa’s condition was still very frail. She learned to walk at 18 months and her fingernails were always blue. At home, she was cherished and coddled by her parents, grandparents, and three older sisters. Everyone waited for the day when Alexa would run and jump and play, unencumbered by a broken heart.
On May 11, 1992, 3-year-old Alexa had a five-hour bypass operation at Children’s Hospital. “I was desperately nervous,” her mother recalled, “so much so that I started smoking a month before the surgery.”
The procedure went well, as doctors created a connection between the right atrium and the pulmonary artery. With the bypass in place, Alexa’s skin was immediately pink. Within six hours, she had regained control of her bodily functions and was making remarkable progress toward recovery.
But two days later, when doctors removed the chest tubes, the excruciating pain threw Alexa into two seizures, a stroke, and a coma. Twice, she stopped breathing, and for two days her family wondered if she would come back to them.
“I learned then why people pray on their knees,” Ezell remembered. “When you’re that upset, you just can’t stand.” Struggling to remain calm and fearing for the future, Ezell turned to her faith in God.
“I went outside, praying, asking God for a sign to show me where Alexa was. Suddenly, I saw a tube of light. Traveling three-fourths of the way up, I found Alexa, comfortable, happy, mellow. She wasn’t upset or scared, but she didn’t know whether she wanted to come back to her body or not. From that point on, I had peace,” Ezell said.
Neurologists explained Alexa’s condition as a protective response to pain. CAT scans showed a spray of bruising over her brain and no one knew when or if it would go away. Within 48 hours from the time the trauma began, however, Alexa spoke her first words. “Ow, Mommy.” Ezell knew then that Alexa would come home.
Two weeks after surgery, Alexa was released from the hospital, but she had very selective speech, she couldn’t sit up, and she couldn’t hold anything. Within one week, she was scooting and pulling herself up on the couch. By the end of six weeks, she was talking and walking, coloring and cutting paper.
In what seemed no time at all, she was running and jumping puddles, things she had never been able to do before. Alexa was well.
According to her cardiologist, Dr. Stanley Stamm, “It is rare for a patient with this heart defect to recover so well.” But with the loving support of her family, Alexa overcame the odds.
Heart Defects Relatively Rare Occurrence
Congenital heart defects, including abnormal development of the heart or nearby blood vessels prior to birth, are fairly uncommon.
According to the American Heart Association, at least eight of every 1,000 infants born each year, 25,000 to 30,000 in the United States annually, are born with a heart defect. Of these, only two or three percent are born with Alexa Lebens’ particular defect, a tricuspid atresia.
In most cases, the cause of a congenital heart defect is unknown. In a few cases, a viral infection such as rubella (German measles) during the mother’s pregnancy may be to blame. Heredity may be a factor, and drugs and alcohol have been proven to be detrimental to the healthy development of an unborn child. But by and large the culprit behind most congenital “inborn” heart defects goes undetected.
Some congenital heart defects are beyond the scope of modern medicine to treat successfully. Surgery by even the most competent and specialized cardiologists cannot always compensate for defects in nature.
The good news, however, is that most children born with a heart defect can be helped by surgery or other medical treatment, even if their defect is severe. In some children, the defect is so mild that there are no outward symptoms and in other cases, signs and symptoms occur only later in childhood or even in young adulthood.
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