Brave Heart: How A Rare Diagnosis Turned into A Divine Blessing.
Never in a million years did I think I would be the mother of a medically fragile child. Six years ago, I didn’t even know the term existed.
My son spent 8 months in the hospital, with most of that time in the ICU. He was diagnosed with a heart defect before birth. Twelve weeks into an unplanned pregnancy, I found out my life was about to change again when a doctor informed my husband and me that our son’s precious heart had formed outside his body.
The condition known as ectopia cordis is extremely rare and occurs in 1 in 8 million births. From what doctors could tell us, some of these babies had survived, but in almost all cases, they passed away within two weeks of birth from heart infection.
As if that weren’t enough, our son’s heart seemed to be severely malformed without pulmonary arteries and possibly missing a ventricle. With the addition of these major heart defects, the doctors informed us I’d likely miscarry before the twenty week mark.
To say I was devastated would be an understatement. I immediately went into physical shock. I remember bowing my head and squeezing my eyes shut, while tears flowed uncontrollably down my cheeks. My husband continued having a conversation with the doctor asking the possibility of survival and our son having a “normal” life. Although I could hear their voices, I had a hard time understanding their words. I began closing myself into the cave my mind had begun retreating to.
That first week I walked around in a fog unable to focus on everyday things. The only thing that got me out of bed in the mornings was the fact I had to care for my 2 and 4-year old daughters. I had to fight my way out of the fog and come to terms with the fact my life would never be the same. Whether my son lived or not, my world had changed forever.
Early on a February morning in 2009, our son, Ryan, was born via c-section at our local pediatric hospital amidst two teams of operating room personnel adding up to over 30 people. I was scared out of my mind. My OB told us it was time to deliver. I remember hearing three very weak cries, like a kitten, and knowing my son was born alive. Because ectopia cordis patients don’t have the proper physical anatomy needed for breathing, I knew he would need intervention immediately.
He was rushed into an adjoining operating room where the critical care team spent 15 minutes stabilizing him and making him comfortable on a ventilator. Beyond the unbelievable news that Ryan survived birth is the fact that his tiny heart was covered by a thin membrane divinely protecting it from outside germs. We would not have to worry about heart infection.
The doctors confirmed Ryan’s right ventricle was underdeveloped and doesn’t work (Hypoplastic Right Heart Syndrome – HRHS) in addition to several other heart defects.
This was our greatest fear. In our pre-birth consultations we were advised that the chances of survival for an ectopia cordis baby are very slim (roughly 10%), but that the chances of survival for an ectopia cordis baby with the addition of heart disease is nil. As in, there’s never been a survivor.
Ryan is the first survivor of this combination of defects!
Ryan continued to grow in the hospital where his team worked for 11 months to get him stable enough to come home for good. In that time, he survived multiple procedures and surgeries to get his heart re-wired enough to come home and his lungs stable enough to breathe without the assistance of a machine. Our family took this grueling journey with him.
It was worth it! Today, Ryan is a thriving preschooler who loves Teenage Mutant Ninja Turtles and superheroes. His stability didn’t come easily. We lugged around medical equipment the first year he was home and have spent countless hours with occupational, speech (for feeding) and physical therapists. But his spirit is priceless. His smile can light up the darkest day. People who meet him and know nothing of his story remark on what infectious joy he brings.
I know all too well the grief of finding out your baby has a birth defect. For this reason, I’ve written a resource for parents called: You Are Not Alone: An Insider’s Guide to Prenatal Diagnosis. It offers heartfelt advice for each stage: prebirth, at the hospital bedside, and coming home. It also contains tips for friends interesting in supporting a family in crisis and a section for parents who have lost a young child. Heart defects are the leading cause of infant deaths in the United States. No one should have to walk this road alone.
Leighann Marquiss is an author, blogger and speaker who uses her experiences to bring hope to those around her. She is the author of Showing Heart: The True Story of How One Boy Defied the Odds, You Are Not Alone: An Insider’s Guide to Prenatal Diagnosis, and Looking Toward the Cross: A 40-day Easter Journey for Families. She and her husband, Henry, have four young children and live in Pittsburgh, Pennsylvania. Visit Leighann’s Website to learn more.