Story by Chris Togneri
PITTSBURGH — 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.
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.
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.
"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."