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Franklin Park mom helps other parents through tough times

| Wednesday, March 11, 2015, 9:00 p.m.
Leighann Marquiss hugs with her son Ryan, 6 at their home in Franklin Park, Thursday, March 5, 2015. Ryan was born with his heart on the outside of his chest cavity (Ectopia Cordis) and spent the early part of his life in a hospital bed. Marquiss has written a book to help parents manage life with a child with medical issues.
Andrew Russell | Trib Total Media
Leighann Marquiss hugs with her son Ryan, 6 at their home in Franklin Park, Thursday, March 5, 2015. Ryan was born with his heart on the outside of his chest cavity (Ectopia Cordis) and spent the early part of his life in a hospital bed. Marquiss has written a book to help parents manage life with a child with medical issues.
Leighann Marquiss sits at her laptop with her children at their home in Franklin Park, Thursday, March 5, 2015. Ryan was born with his heart on the outside of his chest cavity (Ectopia Cordis) and spent the early part of his life in a hospital bed. Marquiss has written a book to help parents manage life with a child with medical issues. Shown left to right is Natalie Marquiss, Ryan Marquiss, Leighann Marquiss, Piper Marquiss and Ainsley Marquiss.
Andrew Russell | Trib Total Media
Leighann Marquiss sits at her laptop with her children at their home in Franklin Park, Thursday, March 5, 2015. Ryan was born with his heart on the outside of his chest cavity (Ectopia Cordis) and spent the early part of his life in a hospital bed. Marquiss has written a book to help parents manage life with a child with medical issues. Shown left to right is Natalie Marquiss, Ryan Marquiss, Leighann Marquiss, Piper Marquiss and Ainsley Marquiss.

When doctors diagnosed Leighann Marquiss' unborn son with a congenital heart defect, she knew where to turn for comfort: Her family and her faith.

Finding information on how to navigate a devastating prenatal diagnosis, however, was a far bigger challenge.

“There's a lot of information on grief for if you lose a baby, but you don't find a lot for a prenatal diagnosis,” Marquiss, 37, of Franklin Park said. “I felt that my experience could be helpful to other people.”

Her experience came from caring for her son Ryan, who in 2009 defied the odds by living — even after being born with his heart outside of his body.

Marquiss wrote about the experience in “You Are Not Alone: An Insider's Guide to Facing Prenatal Diagnosis,” a 58-page guide that leads expectant parents through troubling times.

“The first few months in the hospital were a crash course in medical lingo, becoming my son's voice, and trying to figure out how to mother two older children and nurture a marriage (while) fighting for my son's life,” Marquiss wrote in the introduction. “It wasn't easy. (But) I learned a few things along the way that I'm hoping are helpful to those of you just starting your journey.”

“You Are Not Alone” is available as a free download at Marquiss's website, www.leighannmarquiss.com.

“I couldn't bring myself to charge people for it,” she said. “Knowing how it feels to be in that position, I thought, ‘I can't.' ”

Although the download is free, readers who want a print copy of the book must pay for one through Amazon.

The Tribune-Review wrote about Ryan in a two-part series in December 2011.

Dr. Lee Beerman, director of electrophysiology services and the pediatric arrhythmia program at Children's Hospital of Pittsburgh, said such a guide is “extremely valuable.”

“The Marquiss family have had to deal with one of the most severe and rare type of congenital defects,” Beerman said. “Sharing their experiences and insight into dealing with prenatal diagnoses ... should provide comfort to affected families.

“Although, most of those families will face diagnoses that are not as severe as (Ryan's), it is invaluable for them to know that they are not alone and that there is hope for quality survival of even the most complex and life-threatening cardiac anomalies.”

Congenital heart disease is the most common birth defect, occurring in 0.8 to 1 out of 100 newborns, Beerman said. It is estimated that 40,000 infants are born with it in the United States each year, he said.

Ryan, now 6, is an active preschool student. As Marquiss discussed the book, he jockeyed for space on her lap with his baby sister, Piper. He likes to run around the house. He enjoys lunch trips to Subway, and he pesters his mom to take him to play at the Children's Museum of Pittsburgh.

Then he lift up his shirt. His heart beats visibly, protected only by a thin layer of skin.

Ryan was born with a combination of several heart defects, including the most serious: ectopia cordis, the medical term for a heart that forms outside the chest cavity.

A team of specialists oversaw his birth on Feb. 19, 2009, at Children's National Medical Center in Washington. The family lived in Reston, Va., before moving here in 2011.

Starting at the 12-week sonogram, doctors told Marquiss and her husband, Henry, that Ryan would die in utero. He didn't. Then they said he would die at birth. He didn't. And he became the first baby ever to survive his combination of heart defects, officials said.

“I have a special heart,” Ryan said with a grin. “It goes bu-bump, bu-bump, bu-bump, bu-bump.”

Marquiss's guide chronicles the devastation she felt when she learned of Ryan's diagnosis, how to manage long-term hospital stays and what to expect when bringing a “heart baby” home for the first time.

“People have walked this journey before and you're not alone,” she said. “There are many people around to lift you up and give you hope.”

Marquiss and her husband Henry also have three daughters, Natalie, 10, Ainsley, 8, and Piper, 15 months. She wrote about Ryan's unique condition in a self-published memoir titled “Showing Heart: The True Story of How One Boy Defied the Odds.”

Chris Togneri is a staff writer for Trib Total Media. He can be reached at 412-380-5632 or ctogneri@tribweb.com.

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