Quinn is navigating her congenital heart journey with one team from diagnosis to adulthood
Twice a year you’ll find 6-year-old Quinn Trowbridge and her family at Disney World. “The Happiest Place on Earth” is a fitting destination for a little girl who’s inevitably energetic and fun loving, despite where she is in her ongoing health journey.
A congenital heart disease diagnosis before birth
Dr. Kerri Carter has been caring for Quinn’s heart since “before Quinn was Quinn.”
“I went in for a routine anatomy scan at 20 weeks pregnant and was told there were anatomic anomalies with my baby’s heart and that I would be seen by VCU for the remainder of my pregnancy,” said Quinn’s mom, Brandi Harbert.
With advanced technology and training to perform and interpret fetal cardiac ultrasounds, Dr. Carter diagnosed Brandi’s baby in utero with truncus arteriosus, a very rare congenital cardiac malformation.
“About 1% of all babies have some kind of congenital heart disease and 1% of that congenital heart disease is truncus arteriosus,” explained Dr. Carter. “With truncus arteriosus, instead of two big arteries coming off the heart – one to the lungs and one to the body – there is only one that has branches to the lungs and the body.”
One large blood vessel (which failed to split into the pulmonary artery and aorta during development) allows oxygen-rich and oxygen-poor blood to mix, sending more blood than normal back to the lungs. It also means the blood traveling to the body doesn’t have as much oxygen as it should. Truncus arteriosus can lead to breathing problems, pulmonary hypertension and eventually heart failure, so it needs to be corrected.
Quinn’s congenital heart surgeries at CHoR
The first surgery to repair Quinn’s heart took place when she was only 3 weeks old. A valved conduit was placed from the right ventricle to the pulmonary artery. Brandi and the team went into the procedure with the understanding that Quinn would need additional surgeries in the future.
Brandi brought Quinn for follow-up clinic visits every 6 months so Dr. Carter could monitor her heart’s response to the operation and function over time. Their relationship grew right along with Quinn’s heart.
“I always remember her coming to clinic with hair bows that were practically the size of her head. The bows have stayed about the same size and she’s grown in proportion. She’s been full of personality from the get-go,” said Dr. Carter. “Brandi has been the best advocate for Quinn, always full of thoughtful questions. I might be the cardiac expert, but Brandi is the Quinn expert.”
After waiting as long as she and Brandi felt reasonable, Dr. Carter reached out to Dr. Brian Kogon, chief of congenital heart surgery at CHoR and a congenital heart surgeon at UVA Health Children’s, to talk about the next operation. At this point, Quinn was 5 years old and her heart was beginning to outgrow the pulmonary valved conduit she got as a tiny baby.
On June 3, 2024, Dr. Kogon performed Quinn’s second surgery, with the help of a team of other experts.
“The surgery entailed re-opening the breastbone, connecting Quinn to the heart lung machine, and stopping the heart. While the heart was stopped, the old conduit was removed and a new and larger conduit placed,” explained Dr. Kogon.
Dr. Carter was just steps away.
“Dr. Kogon and I work together both outside and inside the operating room. While he’s operating, I conduct intraoperative imaging to make sure everything he’s repaired functions the way we expect it to before we leave the operating room,” she said.
Keeping care close to home
The partnership between UVA Health Children’s and Children’s Hospital of Richmond at VCU ensures that patients like Quinn have convenient access to the best congenital heart care. Our goal is to keep families close to their communities and support systems as they navigate a congenital heart diagnosis, treatment and follow-up services.
Continued cardiac care so Quinn can be a kid
To no one’s surprise, Quinn came through this second surgery with flying colors. These days, she’s able to do anything her heart desires – including art, music and her newest love, musical theater. Of course, she’s eagerly anticipating her next trip to Disney in the spring too.
“Quinn is able to run and play and do all the things any other kid would do. She has no restrictions and can be whatever she wants to be when she grows up – Olympic gymnast (she takes after me in her love of gymnastics), pediatric cardiologist or the President of the United States,” added Dr. Carter.
While Quinn spends plenty of time being a “typical kid,” she also uses her experience to make a difference for others.
“She loves people and has a huge heart. She’s an advocate for children who were born different and is always willing to show her scar, or as she likes to call it her ‘cutie mark’ – she got that from My Little Pony, and remind people that it’s okay to be special,” said Brandi.
Quinn, like all kids with congenital heart disease, will continue seeing a pediatric cardiologist her whole life, even once she becomes an adult. She’s likely to need additional procedures as well, but that may not mean another trip to the operating room.
“Over time, children will either outgrow the conduits or the conduits will narrow from scar tissue. Each time a larger conduit can be placed it will last exponentially longer than the prior one. Instead of these conduits being replaced by open heart surgery, sometimes they can be replaced percutaneously in the cardiac catheterization lab,” added Dr. Kogon.
Brandi and Quinn will keep leaning on their CHoR team to guide the way.
“They’ve watched Quinn grow, and they’ve watched me grow too. Each step of the way we have been met with unity, solidarity and compassion from every single person who has worked with Quinn,” said Brandi.
Keeping up with Quinn
But everyone knows Quinn’s really in charge.
“Quinn has an amazing little personality. She is smart, funny, witty. She is always smiling, which is contagious,” said Dr. Kogon.
“Quinn makes me so proud every day just by being so true to herself and being so optimistic. The days aren’t always what a normal 6-year-old should have to endure, but she persists and never holds a grudge for all the pokes and prodding she’s experienced,” added Mom. “Despite the terrifying nature of her defect, she holds a special place in her heart for her medical team – or her ‘friends’ as she calls them – and knows that even though hospitals can be scary, they can do amazing things for kids. Quinn is a testament to all things beautiful in medicine and in life.”
Drs. Carter and Kogon will continue working to make sure Quinn’s unique and giving heart can keep up with her.
“Quinn is at an age where I start including some special conversations and education about how her heart is different so she feels empowered to know about her body as she grows,” said Dr. Carter. “My hope for her going forward is that she soaks up all the positive traits her mom has shown over all these years and continues to put that fierce personality into the world. We could use more Quinns.”