Heart Surgery

Patient Stories | Dylan and Congenital Heart Defect

Saying ‘Yes’ When Others Could Not: Saving Dylan Despite Complex Heart Defects

After being diagnosed with multiple heart, lung and other organ problems in utero, Dylan wasn’t given much of a chance at survival in his home state of Georgia. When physicians said they couldn’t operate on him, Dylan’s parents, Stephany and Dart, turned to Cincinnati Children’s.

“When we found out about Dylan’s heart defect, our world shattered,” Stephany said. “The team at Cincinnati Children’s was willing to do what others were not. And Dylan is here today because of it. Cincinnati Children’s was the one that said yes when everyone else said no."

When Joy Turns into Despair

Stephany and Dart were overjoyed when they found out Stephany was pregnant with their second child just after their daughter, Audrey, had turned 2.

Hearing the heartbeat at the first appointment reassured them, especially after genetic testing ruled out many hereditary conditions. Everything seemed normal heading into the 20-week anatomy scan, but things quickly changed.

“The sonogram tech was very talkative, but after we heard the heartbeat she started getting quiet,” Stephany said. “She was focusing on the heart a lot. And when she left the room she said she would have the doctor come in and talk to us.”

The doctor said they saw a hole in the middle of the heart, an atrial septal defect (ASD), during the ultrasound—a common congenital heart defect that is easily fixed with surgery after birth. She sent Stephany to a perinatal specialist to confirm and check for other abnormalities.

That specialist found four defects in Dylan’s heart. Stephany and her husband were devastated.

“We did not have a baby shower for Dylan because we were so afraid of coming home to an empty nursery,” Stephany said. “I just felt stress and worry the entire time I was pregnant.”

The news continued to get worse as further testing found Dylan had heterotaxy syndrome, a condition common in children with congenital heart defects where the organs are in the wrong place. Dylan also had a hernia and was missing his spleen. However, Stephany’s care team continued to be confident—until they found an issue with Dylan’s lungs.

That’s when Stephany’s provider said they could no longer care for Dylan, who now had a slim chance of survival. They recommended going out of state to find a doctor willing to operate.

Finding a Chance for Hope

Stephany and Dart began reaching out to hospitals that might be able to help. While researching, they were reassured when they saw that Cincinnati Children’s took on many high-risk pregnancies and performed significant research on Dylan’s heart condition.

The care team at Cincinnati Children’s agreed to review the case, acknowledging that it was complex and they couldn’t guarantee anything.

“We wanted to hear that everything is going to be fine and will be easy,” Dart said. “But at that point, we just wanted someone that would give our son a chance after being turned away.”

Ultimately, though, it was meeting with David Morales, MD, executive co-director of the Heart Institute and director of the Division of Cardiothoracic Surgery at Cincinnati Children’s, that helped the family know they were in the right place.

“Meeting with Dr. Morales was the first time that somebody was willing to give us good news and say there is a possibility that Dylan can survive,” Stephany said. “Cincinnati Children’s was the first hospital that said we’re going to give him a fighting chance. We knew it was a high-risk surgery and they didn’t want us to be blindsided, but they said they would do everything they could to save his life.”

Stephany underwent a full day of testing before the full clinical team met to review Dylan’s case. The family got the news the same day: Cincinnati Children’s would take on Dylan’s care.

“I think leading up until then, we had a lot of fear,” Stephany said. “This was the first time we started to have a little bit of relief and not feel so fearful for once. I started to have hope again.”

Dylan’s plan would be complicated, involving three separate surgeries spread out over months, but Stephany and Dart were grateful to have a path forward. 

“Here at Cincinnati Children’s, because we have so much talent and so much infrastructure, we’re able to provide hope,” Dr. Morales said. 

A Whirlwind Start to Life

Stephany and Dart traveled from Georgia and arrived at Cincinnati Children’s when Stephany was 37 weeks pregnant. She had numerous appointments leading up to her C-section and she and her family met more doctors from the extended care team who would be treating Dylan after his initial surgery.

The morning of the C-section brought many nerves for Stephany. She knew she would deliver her baby in the Special Delivery Unit at Cincinnati Children’s Fetal Care Center, and was informed by the care team that Dylan would head straight into surgery after birth. 

“I wouldn't be able to hold him,” Stephany said. “But once he came out, I heard him cry and I just immediately started crying. I thought ‘wow, he’s going to make it through this.’”

Stephany felt comforted that she could visit Dylan the same day since he was in the same building. Despite recovering from her C-section, her care team wheeled her over to Dylan’s room around 10 pm after he’d completed his first of several surgeries to repair his heart. Though Stephany says she could barely squeeze in the room given the size of the care team supporting her brand-new son, she still got to see him the day he was born.

While the initial surgery was a success, Dylan still was in a critical period as his care team watched him for complications. An emergency just days after he was born showed just how fragile his young heart still was.

“I got a call that Dylan had a cardiac arrest and it didn’t look like he’d make it,” Stephany said. “They said they would need to put him on ECMO, which is essentially life support, and needed me to come right away. My care team wheeled me over and I thought, ‘I’m literally on my way to say goodbye to my child.’ Then Dr. Morales walked in—he’d literally run up from his car and went straight into the room.”

Dr. Morales emerged with the good news that Dylan did not need to go on extracorporeal membrane oxygenation (ECMO).

“Dr. Morales told us, ‘He made it through. We got him back. The ECMO machine is right there, but he doesn’t need it. He proved us wrong,’” Stephany said.

Feeling at Home, Hundreds of Miles Away

Stephany and Dart had anticipated being in Cincinnati for three months. That quickly evolved into 11 months as they waited for Dylan to gain enough weight to undergo his second surgery to fix the four defects in his heart.

“Fortunately, we were able to discharge from the hospital and go live over at the nearby Ronald McDonald House in that period,” Stephany said. “It ended up taking close to seven months until he was large enough and prepared for the second surgery.”

Dylan had the support of the Single Ventricle Interstage Clinic team, a specialized group of providers who monitor cardiac patients between their multiple surgeries and make sure they are ready for their next step. That care is important, especially considering Dylan’s second surgery was a complicated surgery that took more than 13 hours to complete—twice as long as Dylan’s first surgery. After the surgery, Dylan also had complications with his kidneys that led to him needing dialysis for several weeks.

“Dylan was laughing and playing and having his own personality,” Stephany said. “So, for your son to go back into surgery and then kind of rewinding is hard to see.”

Still, the family found support during Dylan’s lengthy stay.

“We started to get to know the nurses and have the same ones over and over again,” Stephany said. “We would even have days when we would have one nurse and then a nurse we’d seen would come in and just check on Dylan because they already formed this relationship with him.”

Stephany and Dart learned more about Dylan’s care as his doctors kept them engaged in their daily rounds.

“I appreciated that you felt much more involved and that you were listened to,” Stephany said. “That means a lot because a lot of things are out of your control. And that’s a really hard thing to take as a parent because it’s your child and you want to be in control.”

By the time Dylan got his third surgery, everyone was ready for him to be healthy enough to go home.

The Miracle of Making It Home

Despite that grim initial outlook Stephany and Dart received for their son before he was born, Dylan returned home to Georgia just days before his first birthday. 

“We spent 11 months of our life there and it was a sacrifice spending time away from my daughter, my home and my husband,” Stephany said. “But we would do it all over again in a heartbeat because we have him here today. We came home with our son.”

While there are still challenges—Dylan is tube-fed and receives a long list of daily medications—he is a happy, growing boy. 

“I mean, honestly, you would never know that he was in the hospital as long as he was,” Stephany said. “He definitely is a happy child.”

There will likely be more open-heart surgeries in Dylan’s future, but Stephany and Dart hope the next one will be a few years down the road. For now, they are grateful for the care they received and that they get to watch Dylan grow. 

“Dr. Morales is my superhero,” Dart said. “He saved my son. There’s nothing more he could have done for us. And Dylan is the strongest boy I know. I’m proud of him just the way he is.”

(Published March 2025)