Leighann Marquiss was just 12 weeks pregnant when she and her husband, Ryan, learned that their baby had a rare heart defect, ectopia cordis. It is a condition in which the baby’s heart is located outside of the body. The condition affects only one out of eight million births, but the prognosis of the condition is very bleak; 90 percent of children born with the condition are stillborn or die within three days of delivery. It is because of this prognosis that doctors advised the couple to terminate the pregnancy.
Leighann and Ryan went against medical advice and continued the pregnancy. And as a result, every day is a miracle.
“We wanted to let nature take its course, so we refused to have the termination,” Leighann said. “We knew it would be a miracle if he survived the birth, but we were unwilling to take matters into our own hands.”
In February of 2009, Ryan was born by caesarian. A team of thirty medical professionals were on hand to assist with his delivery at the Children’s National Medical Center in Washington.
But upon arrival, Ryan and Leighann would learn that their son’s condition was even more complicated. Ryan also suffered from hypoplastic right heart syndrome. It is a condition in which the left half of his heart did not develop correctly.
Things did not look good for little Ryan. Even the doctors had a hard time seeing past the odds stacked against him. Dr. Mary Donofrio, Director of the fetal heart program at the Children’s National Medical Center was one of those doctors.
“If he survived the birth, his exposed heart would likely become infected and kill him,” said Dr. Donofrio. “Even if infection didn’t happen, his heart had one working ventricle and he would require open heart surgery to rewire the blood flow through it. I told the family right from the start that if he survived, it was a miracle.”
Leighann remembers what it was like, seeing her son after his birth, grappling with the chance he might not survive.
“His heart was protruding out of his chest cavity,” she said. “The heart was only covered by a thin membrane. But he was alive and we just had to pray that he would carry on fighting.”
At two weeks old, Ryan had his first surgery; the one that would correct the blood flow of his heart. He would receive more than a dozen operations over the next two years, including an operation that would replumb his heart so that it could do the same amount of work as a full-sized heart and an operation that would expand his skin so that they could better cover his exposed heart.
“He has done amazingly well,” Leighann said. “He has been so brave throughout it, and his sisters have kept him going too. They have been to see him in the hospital and made recordings of themselves at home, so Ryan could hear them.”
“He just kept on fighting. He refused to die, and kept on proving everyone wrong.”
In the future, Ryan may need surgery to add some form of protection for his heart. He may also require a heart transplant, but this little miracle is doing exceptionally well right now. He is doing so well, in fact, that his case has been reported to a medical journal to help provide hope for other children with similar conditions in the future.
For now, though, Ryan is getting ready to celebrate his third birthday and his parents spend their days cherishing each moment with their miracle baby.
“He really is a medical miracle,” Leighann said. “When I look at him running around the playground and playing on the climbing wall, I praise God. Every day with Ryan is one we were told we wouldn’t have. So we cherish each moment.”
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