Pittsburgh, PA – From his high chair in their Franklin Park home, Ryan Marquiss watched his mother make breakfast and help his sister, Natalie, 7, get ready for school. He finished eating his toast and lifted his hands triumphantly.
His sister, Ainsley, 5, rushed over to kiss his cheek, making him giggle. He pulled his T-shirt over his head, exposing his chest. His heart, formed outside his chest cavity and covered only by a thin layer of skin, beat visibly.
Ainsley cupped her hand over the pulsating heart, and Ryan, 2, squealed with delight as she tried to push it into his chest.
This is the boy doctors said would surely die.
From the moment they detected abnormalities during Leighann Marquiss' 12-week sonogram, they told her and her husband, Henry, the baby had no chance. Ryan's deformed heart was growing outside his body, they said. The baby would suffer heart failure and die in the womb within weeks.
No baby with Ryan's combination of defects had survived, they said.
They told the couple not to expect a miracle, and urged them to abort. No, said Leighann and Henry, if the baby is going to die, we'll let it die naturally.
"He's just a normal boy," Leighann said, watching the morning scene in her kitchen nearly three years later. "He falls down and scrapes his knees. He says, `Mommy, mommy, mommy.' He plays with his sisters.
"Of course, sometimes I tell them to stop touching his heart. What other mom says that?"
Ryan Marquiss' story of survival, following his risky birth at Children's National Medical Center in Washington, combines a family's faith and love with uncharted medical expertise. Doctors involved with his birth and care say that because he lived, they've begun to look differently at their approach to babies with his rare combination of heart defects.
His costly treatment coincided with national debate over health care costs, but the family's insurer, Aetna, offered no resistance, hospital officials said. The family's coverage plan and proximity to a hospital with specialists helped, as did the hospital's "gold standard" rating that caused Aetna to trust its doctors to make wise decisions, officials said.
Leighann and Henry, both 34, began dating in high school at Heritage Academy in Hagerstown, Md., where their graduating class totaled 15 students. Until August, when he took a job with The PNC Financial Services Group Inc. in Pittsburgh, they lived in Reston, Va.
Dr. Mary Donofrio was the first doctor to give them hope.
Donofrio, director of the Fetal Heart Program at Children's National, believed she could help Ryan -- even though at 22 weeks into Leighann's pregnancy, the baby had lived longer than anyone expected.
The medical term for his unprotected, vulnerable heart: ectopia cordis. If he did not die in the womb, the birthing process could be fatal, Donofrio explained. If he survived birth, his exposed heart likely would become infected and kill him. Even if infection did not 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, there is no statistic I can quote them," she said. "Ryan is uncharted territory. If he survived, it was a miracle.
So however you want to assign a statistical chance of survival, based on that, that was what we were working with."
Yet, she promised to do everything she could to save him.
Leighann's spirits rose. Initially, after hearing about her baby's condition, she prayed to miscarry. But during one such prayer, she felt that God spoke to her, telling her to trust that the baby would be OK. She vowed to love and care for the child as long as she had him.
God has a plan for Ryan, Leighann told herself, and Dr. Donofrio is part of that plan.
"I realized that the expertise that's here enables us to pull off miracles," Donofrio said. "I certainly would not have offered if I thought there was no hope. I knew ... that if I could coordinate the multiple teams to work together, Ryan did stand a chance."
In the months leading up to Ryan's birth, Donofrio and the specialists she assembled planned for possible outcomes. They sat in a conference room for hours, brainstorming potential complications and crafting solutions. For a normal cesarean section, five or six medical personnel attend the birth; for Ryan, more than 30 specialists would be involved, including anesthesiologists, plastic surgeons, general surgeons, cardiac surgeons and nurses.
The medical team's work cost more than $4.5 million, according to hospital officials and receipts Leighann and Henry kept. Aetna paid most of that amount.
On the scheduled day of Ryan's birth, many doctors still doubted they could save him.
"We were scared," Donofrio said. "We didn't know what was going to happen, and the emotions were very high. There were so many people in the (delivery) room that it was overwhelming -- for the family, but also for us as a medical team."
Leighann was terrified. On Feb. 19, 2009, when they wheeled her into the room filled with masked faces, beeping machines and medical tools laid out on white sheets, she panicked.
"I really liked Ryan being in my stomach because I knew he could live in there," she said. "At one point, I said, `I can't do this. I'm not kidding. Get me off this table.' "
Henry sat by his wife's side, holding her hand. They did not choose a name for the baby, whose name tag on his hospital bassinet read: Baby Boy Marquiss.
"It was hard to commit," Henry said. "I mean, you love him; that's your kid. ... But you know he's going to die."
Doctors who took the baby from Leighann's abdomen rushed him to a warming table away from the parents and waited for signs of life that did not come.
"Most babies let out a cry and expand their lungs and clear out the water that's in the lungs," Donofrio said. "They begin breathing right away; you can see air moving in and out. Ryan was making no attempts to breathe and he was beyond blue. He was purple, almost black. That's how hypoxic, or without oxygen, he was initially."
Dr. Richard Levy, a cardiac anesthesiologist and resuscitation expert, placed an oxygen mask over his face to push air into his lungs. When they began working, he inserted a breathing tube and hooked Ryan up to a ventilator.
A second problem emerged: Ryan was born with an omphalocele, an abdominal defect that pre-birth imaging did not detect. The medical team had to scuttle its plan to insert an IV line into his umbilical vessel because, as a result of the omphalocele, there were no umbilical vessels to tap.
Dr. Nina Deutsch, a pediatric cardiac anesthesiologist, placed an IV in his hand. Ryan's condition stabilized as crucial medications began to flow.
When he finally cried -- "like a little, weak kitten," Leighann recalled -- she broke into tears.
As expected, Ryan's heart was outside his body. Unexpectedly, however, a thin, translucent membrane covered the hole in his chest.
Donofrio had warned his parents that infection posed a serious risk to an exposed heart, but the membrane was a shield. Ryan would not yet need surgery to cover the heart, and the plastic surgeons were dismissed.
"It was God's way of saying, `I've covered it,"' Leighann said. "It eliminated the problem of heart infection right away and allowed them to focus on the right ventricle not functioning."
This was his first break.
Over the following two years, he would endure 13 major operations and procedures, including open-heart surgery and multiple heart catheterizations.
"Without divine intervention, this baby had no chance," Leighann said. "Over and over, they told us that my baby would not live past 20 weeks, that I should just terminate now. ... Maybe now they'll stop saying that to other mothers."
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