Mom's memoir recounts boy's struggle for survival

August 23, 2013
  • Leighann Marquiss wrote a memoir about her familys journey with her son, Ryan. Ryan was born with ectopia cordis, which causes the heart to be formed outside the body.
Kevin G. Gilbert /

Name: Leighann Marquiss

Age: 36 

City in which you reside: Pittsburgh

Hometown: Hagerstown

Day job: Mother

Book title: “Showing Heart: The true story of how one boy defied the odds”

Genre: Memoir

Synopsis of book: An inspirational account of one family’s journey as they face the fatal diagnosis and surprising survival of their youngest child. 

Publisher: Self

Price: $12.99 paperback; $9.99 e-book

What inspired you to tell Ryan’s story about being diagnosed before he was born with ectopia cordis, a congenital malformation in which his heart formed outside his body? 


Early on, I journaled and blogged what we were going through. At some point I realized that, with how little information there is out there on Ryan’s condition, our experience could be helpful and inspirational to others. 

Your story reads like a novel, with lots of dialogue and facial expressions. The reader feels right in the room with the people in the book. This precise recollection came from your journaling and blogging? 

I had a lot of journal and blog entries. I was advised by other “heart moms” to keep records of conversations with doctors because after awhile they all mesh together and it’s hard to keep everything straight. Because I jotted notes about many conversations, I had something to work off of. In other instances, I can remember clearly the setting of a scene or the exact words a doctor or nurse said to me, even today. There are some things a parent never forgets. However, to keep the story flowing I did combine some aspects of conversations and consultations together. For scenes of our family life, I combined real-life personalities and things we do all the time to make a scene come to life. 

What was your process of writing like? How long did it take you to write?  

I started journaling and blogging during my pregnancy. I had blogged before I was pregnant with Ryan, but it turned into a natural outlet to inform friends and family of day-to-day feelings and changes once he was diagnosed. It took me until he was just (older than) 4 years old to bring the manuscript to print. The process was a lot harder than I realized. It took an amount of discipline to complete. Having three little kids, one with medical challenges, made it difficult to write during the day. My typical writing time was 11 p.m. to 1 a.m. several nights a week. I didn’t want to take away from time with the kids or my husband. There were months at a time when I didn’t work on it at all and then I’d pick it up for three or four months. In the last editing period, I finally moved my writing time to after the kids were asleep or when they were at school to cut down on typos. It’s hard to edit in the wee hours of the morning. 

Though you write in an informal style, this a pretty thorough book, with plenty of information about Ryan’s condition woven into the story. What research did you do to add to what you learned during pregnancy and after Ryan’s birth? 

When you have a child with a medical condition, most of the research and learning comes in the beginning of their life. I didn’t do any real research for the book. I relied on what doctors, nurses, and Internet searches had taught me during Ryan’s hospitalization and plenty of experience at home. The only additional searches I did to make sure the book was accurate was to look up the spelling of certain medical terms and confirm a few statistics I was told while Ryan was hospitalized. Ryan’s cardiologist read the book before it was published and corrected some of my terminology, which was very helpful and made me feel comfortable with my medical jargon. 

You call yourself an introvert in the book, but you laid out your life pretty openly. 

I am an introvert in that I get exhausted after several hours of socializing and don’t like large crowds, especially ones filled with people I don’t know. Additionally, I have a hard time vocalizing my feelings before I process them, and only then, will I share with people with whom I’m very close. Writing the book openly was one of my biggest challenges. 

Is this one of those contradictions found inside authors? 

The first time the editor sent it back he told me how wonderfully clear the medical part was, how the kids’ characters were well developed, how great the dialog was... he then said there were two people missing from the book: (my husband) Henry and me. He encouraged me to show a little more of myself and my marriage to make the book complete. It was an extremely difficult process (but a healing one) to make myself face what I was feeling and relive Ryan’s hospitalization. I think he’s right though. It makes for a much more connectable story. 

How old is Ryan now? 

Ryan is 4 1/2.

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