A New Take on World Heart Day: The Promise of the Ghost Heart
Yesterday was World Heart Day. It’s a day the world specifically celebrates the heart, and for those of us in the congenital heart defect community, it gives us a chance to celebrate our special hearts in a whole new way.
On Facebook and LinkedIn, I saw a lot of posts dealing with the statistics involved with pediatric and congenital cardiology, so I knew I didn’t really need to write a post about that. Luckily, there are now plenty of advocates in the heart world who are doing that. Instead, I wanted to write about my own special encounter with a very unique heart: a ghost heart.
Back in 2013, I wrote about a radical idea: a “ghost heart.” I never imagined I’d one day stand face-to-face with one glowing under a constantly changing kaleidoscope of lights looking like something out of a science fiction movie. On September 27, 2025, I not only had a chance to see the ghost heart I’d written about so many years ago, but I also had a chance to bid on it at a live auction that was raising funds to continue the cutting-edge research led by Dr. Doris Taylor.
The ghost heart glowing in blue light at The Cure Gala 2025
When Andrea Brickey reached out to me to tell me about The Cure Gala and to invite me to attend it, I was intrigued. I didn’t know about Building the Cure Foundation or Desiree Freris, but I did some research, talked to these two amazing people thanks to Zoom, and featured them in a news segment of my flagship podcast, Heart to Heart with Anna. They invited me to attend their gala, and before I knew it, Frank was being fitted for a tuxedo, and I was out buying new shoes for a dress fit for the occasion.
When I saw that Dr. Doris Taylor was the doctor I’d featured on the Baby Hearts Press blog over a dozen years ago, I knew I had to hear her speak in person. She was to be the featured speaker, and I wanted to hear her talk about her fascinating research—research that could change the course of my daughter’s and countless other heart warriors’ lives. I also wanted to meet Desiree and Andrea in person.
I was disappointed to hear that Dr. Taylor was sick and unable to attend. Since she couldn’t make it, she sent a video that was played at the event, and it helped us all better understand the research she and her colleagues have conducted successfully since 2008, when she and her research team washed the cells out of a rat’s heart and began working on the translucent or “ghost heart” left behind.
Dr. Doris Taylor’s video featured on the big screen at The Cure Gala 2025
They graduated from a rat’s heart to a pig’s heart, and then they did the unthinkable. They infused the ghost heart with blood vessel cells and let them grow in the matrix for a couple of weeks. Then they began injecting immature stem cells into different regions of the scaffold and began teaching the cells how to grow. The heart is a complicated organ because, in addition to tissue and muscle, there are electrical impulses that must beat properly so the blood goes to the lungs for oxygen or to the body to deliver the oxygen-rich blood. If the electrical impulses are not coordinated, the heart can have blood backing up in the lungs, causing congestive heart failure.
When I first read about the ghost heart, I was excited to hear about Dr. Taylor’s belief that she could take a ghost heart and seed it with stem cells from an individual so that the new heart could be transplanted into a person whose own heart was no longer functioning optimally. Someone who might die without a heart transplant. Someone like my daughter—a person born with a single ventricle heart. I’d even read journal articles positing that perhaps transplant was the 4th stage of the Norwood-Fontan procedure that was used to save people like my daughter. Could Dr. Doris Taylor’s work one day save my daughter’s life?
In Dr. Doris Taylor’s video, she showed all of us members of her team working to advance their research on the ghost heart. Perhaps the most exciting part of the video was at the end, where they talked about having a working heart within the next 6–7 years. That means I just might be alive to see this concept become a reality and actually save a life.
On World Heart Day 2025, I think it’s important for us to recognize this research and to support it. As excited as I am for the possibility that it might save my daughter’s life, many other people may also benefit from it. The fact that the ghost heart will be seeded with an individual’s own stem cells greatly reduces, or possibly eliminates, the need for immunosuppressive drugs—the drugs that often cause our transplant recipients to die from cancer or other illnesses because their body must have its own immune system depressed to prevent it from rejecting the heart. How many lives may be saved from this research? The very thought is mind-blowing.
I’m so thankful Andrea Brickey reached out to me and set up a meeting with us and founder Desiree Freris. I loved having a chance to meet Desiree in person—she also agreed to join me on Heart to Heart with Anna, and I can’t wait to share more of her story with you.
But that wasn’t even the biggest surprise of the night—one encounter left me speechless. I’ll share that story, and why it matters to our community, on the Hearts Unite the Globe blog.