Franklin Park mom pens memoir on coping with son's medical issues
Ainsley Marquiss tosses a white blanket over her little brother Ryan's head and giggles.
"Wanna do Marco Polo, Ry-Ry?" she says.
Ryan squeals with delight and shouts out "Marco!" He extends his arms under the blanket and slowly tracks his sister's voice, gliding across the floor like an unsteady ghost.
The only sign that Ryan Marquiss is different from any other 4-year-old boy is hidden beneath the white cotton of his T-shirt: Beating visibly, protected only by a thin layer of skin, is the stubborn heart of a boy who refused to die.
The story of his unlikely survival - and his family's determination to keep him alive even when doctors said he surely would die - is being told in "Showing Heart: The true story of how one boy defied the odds," a self-published memoir by Ryan's mom, Leighann Marquiss. It is available at Amazon.com.
"I'm a very private person; I don't show my feelings much," Marquiss said in her Franklin Park home as her children played nearby. "I forced myself to write about things I didn't have the time to process during the pregnancy and the first year at home. ... I still go back and read through sections and almost have an anxiety attack."
The Tribune-Review wrote about Ryan in a two-part series in December 2011.
Ryan was born with his heart outside his body. At the time, no baby had ever survived his combination of heart defects.
A team of specialists oversaw his risky birth on Feb. 19, 2009, in Children's National Medical Center in Washington. The family lived in Reston, Va., before moving here in 2011.
Leighann Marquiss's memoir begins in a Virginia doctor's office, where she and her husband, Henry, both now 35, learn that something is wrong during a sonogram in her 12th week of pregnancy.
When the image of the fetus appears on the screen, Marquiss writes, the nurse leaves abruptly to get a doctor.
There is no hope, the doctor tells them. The fetus will die by the 20th week of pregnancy.
"Twenty weeks ... twenty weeks. It reverberates through my brain like a mantra," Marquiss writes. "Twenty weeks minus twelve. I have eight more weeks with this baby. Eight. More. Weeks. Numb and confused, I close my eyes, shutting out the world around me. I feel Henry's hand reach out for mine. He curls his fingers around my tightly closed fists and strokes them with his thumb. All I can do is sit and weep."
Ryan has a rare condition called ectopia cordis in additional to other heart defects. Doctors urge Leighann and Henry to abort.
They ignore the advice, opting instead to go home and wait for their baby to die naturally.
"Will I have to pick out a casket?" Leighann writes. "What will I bury him in? Do I really want to plan that far in advance? If I plan for these things, does this mean I'm not trusting God to heal this baby?"
Marquiss writes of her descent into depression, of holding her daughters close and weeping into the backs of their heads so they can't see her tears. She describes in great detail every doctor's appointment, every newfound ailment afflicting her son, every bit of hope inevitably dashed.
But as the title suggests, Ryan defies the odds.
And in doing so, he changes the medical world.
Before Ryan, there was no hope for babies with his combination of defects. That's no longer the case, his doctors said.
"Ryan is a symbol of hope. He's an amazing kid. He defied all the odds and he's still going strong," said Dr. Mary Donofrio, director of the Fetal Heart Program at Children's National and head of Ryan's medical team. "What he's been able to achieve is not just because of what we did, but because of Leighann and her determination."
Besides his risky birth, Ryan nearly died twice in the first two years of his life, and has since endured more than a dozen major operations and procedures, including open-heart surgeries and heart catheterizations. More surgeries await, and doctors eventually will have to figure out a way to protect his heart.
For now, though, he is a normal little boy.
He plays with his sisters, Natalie, 8 and Ainsley, 6. He falls down, scrapes his knees and comes up with mysterious bruises. He smiles constantly.
Marquiss started writing about Ryan soon after learning of his health issues. Unable to talk to family, she blogged to keep them informed.
"It was a healthy outlet," she said. "You can say whatever you want when you're just writing. It was a very easy way to give friends and family updates."
The book is different than the technical, detailed blog entries, she said, because it delves more into her emotions and daily struggles first with hopelessness, then uncertainty.
"I spent a lot of time trying to include my voice," she said. "I hope that comes through."
Chris Togneri is a staff writer for Trib Total Media. He can be reached at 412-380-5632 or firstname.lastname@example.org.