This is the story of the unique bond between Penn Edwards and the hospital that saved his life. It begins before Penn was even born.
During a fetal ultrasound at just 25 weeks, Penn’s family found out that Penn would be born with a heart defect.
At the suggestion of mom Natalie’s ob/gyn, the family immediately shipped out from their home in Marshall County to Norton Children’s Hospital in Louisville, KY. where doctors told them that Penn would arrive with hypoplastic right heart syndrome, a congenital heart defect where the right atrium and ventricle are underdeveloped.
“I was devastated,” Natalie recalls of the diagnosis.
“I knew he had surgeries ahead of him.”
“I knew that they could be successful, but they also could not be.”
“We just didn’t know.”
Penn’s first surgery at Norton Children’s Hospital inserted a shunt into his heart when he was only three days old. The family spent seven weeks in the hospital’s pediatric intensive care unit and neonatal intensive care unit.
He had a follow-up heart cath procedure at only 18 months old. Both surgeries were a success.
“It’s done exactly what they said it would do,” Natalie says of now nine-year-old Penn’s heart.
Having developed a relationship with the doctors and staff at Norton Children’s, it was around the time of his second surgery that Penn’s parents Natalie and Justin began to consider ways that they could quantify their gratitude to the institution that had saved their son’s life.
“We knew we wanted to give back to Norton’s cardiac unit, we just didn’t know how,” Natalie says.
“We developed relationships with these cardiologists and their teams and we just said, ‘How can we help? What can we do? You’ve done so much for us, how can we give back?’”
“That’s where it started.”
The initiative that was born from these conversations was Penn’s Pace, an organization that annually comes together to do things that Penn and his family love in the name of supporting the team that keeps Penn healthy.
At first, Penn’s Pace celebrated its namesake’s athletic nature by hosting 5k fundraisers.
“People rallied around us and they were really successful,” Natalie says of the initial fundraising efforts.
After that, the family, according to Natalie, wanted to “venture out and do something bigger.” Since all of the boys in the family play golf, including Penn, the Penn’s Pace Annual Golf Scramble was born.
“It just blows my mind every year the support from our family and friends,” Natalie says.
“They just continue to help and give and want to be a part.”
“It wouldn’t happen–the tournaments and fundraisers would not happen–without the support of this community.”
The Penn’s Pace donations have coincided with a major milestone for Norton Children’s Hospital; the establishment of a cardiac intensive care unit (CICU) for patients just like Penn. Currently under construction, the Jennifer Lawrence Cardiac Intensive Care Unit was established in 2016 with a $2 million gift from the Lawrence Family Foundation.
“When Penn was there for open heart surgery he was in the PICU, the critical care unit with all the other critical care kids,” Natalie remembers.
With 17 expected beds in the CICU, the Edwards have already raised enough for one of them to bear their son’s name. Through Penn’s Pace, they have donated nearly $35,000 altogether.
Just as the Edwards family is thankful for Norton Children’s, hospital officials say the sentiment is returned.
“We are grateful to our families who feel so strongly about the care and services they received,” says Lynnie Meyer, Ed.D., R.N., CFRE, senior vice president and chief development officer for Norton Healthcare.
“These are patients and families who faced difficult times, and the fact that they want to continue to support the Children’s Hospital Foundation is just remarkable.”
For the Edwards family, though, their continued support of Norton Children’s is simply an extension of the love that they have for their son.
“Penn will always be a patient there, even as an adult,” Natalie says.
“Maybe in a few years, he may be able to stay in one of the rooms in the CICU after his surgery that has his name on it, and that’s going to be awesome.”
“Norton Children’s Hospital will always be a part of Penn’s story.”
“It will always be a part of Penn.”
“And that’s what I want Penn to know, when he’s 20 or 30 with kids of his own, the impact that they had on him and how they helped save his life.”
The Edwards family is currently planning this year’s fundraising event for Penn’s Pace. If you would like to support Penn’s Pace, with your time or donations, please reach out via email to Pennsheartpace@gmail.com.
