I have unique insight on the parental dynamics of child cardiac hospitalization, on-site physical parental needs, parental emotional management, and issues of parental advocacy for ill or dying children.

In 1995, my youngest daughter was born with Tetraology of Fallot, a rare congenital heart defect. At day three of life, she underwent her first open-heart surgery. Her father and I were called into the Chaplain's office with devastating news - every time the chest cavity was closed following surgical repair/replacement of her heart valve, she would die. The Chaplain was resolved to simply deliver the grim news and manage the emotional aftermath.

However, I began to ask questions. "You say that every time the chest cavity is closed, she dies, right? You told us earlier that the heart was enlarged due to increased work load, right? What if it was possible to keep the chest cavity opened long enough to allow the swelling to go down and then, afterward, go back in and then close the chest? Could the chest be covered with something to protect it until the swelling decreases?"

The Chaplain immediately rose from the chair and announced to us that she would be right back. "Don't go anywhere. I'll be back. I'm going to speak with the surgeon."

My daughter's chest cavity remained open for close to a week, with a yellow plastic, adhesive covering to allow room for the swelling to decrease. She was kept in the PICU (Pediatric Intensive Care Unit) there at Cook's Children's Hospital in Fort Worth, TX before being moved to the surgical unit for closure of the chest when most advantageous.

She lived, and to this day requires no cardiac medications on a daily basis. My daughter will be 24 this August 26, and this aggressive act of child advocacy may have set a medical precedent. She has undergone two more surgeries as her heart grew naturally; one at 5 years of age, and the last at 17 years old.

Different emotional dynamics occurred at each surgical experience for her, most especially, but also for me as parent; the third was the most heart-wrenching. Any fellow researcher in need of particular input for devising measures to assist such parents are more than welcome to reach out to me. I will be more than happy to help.