Liam’s shirt is just one indication of his resilience. It reads “Good Mood Dude.” As the one-year-old wraps up another appointment at the Heart Institute at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, he beams a radiant smile and waves as nurses walk past his exam room. It’s that attitude which continually impresses his parents, Luis and Amanda, and is also what helps Liam overcome every obstacle. 

“He is so strong and he's so happy,” Amanda says. “That's what makes me happy, because despite everything he has been through, he is giggly and smiley.”

Early Detection 

It was at Amanda’s third ultrasound appointment that sonographers revealed a potential problem with Liam’s heart while in utero. “My other two babies were healthy and so hearing that was terrifying,” Amanda explains. “But I will say, finding out in the beginning ended up being helpful to us because we were able to get great cardiology care even before Liam came into the world. It felt like we already had like a whole team cheering him on.” 

Doctors at Johns Hopkins All Children’s Hospital’s Sarasota Outpatient Care Center stepped in to help Amanda and Luis with expert cardiac care. Pediatric cardiologist Michelle Miller, MD,, who specializes in fetal cardiology, used a fetal echocardiogram to determine Liam’s diagnosis. Liam had tricuspid atresia with transposition of the great arteries, a serious congenital heart defect where the tricuspid valve is missing or fails to form. The condition also causes the aortal and pulmonary artery to be switched, which results in too much blood flow to the lungs and not enough to the body. The condition often requires multiple surgeries to redirect blood to the lungs and body. 

Luis remembers the fear that overtook him when he heard the diagnosis, but he also remembers something else: a piece of advice that would help him and Amanda get through many difficult moments ahead.

“Dr. Miller said, ‘go with the flow, day by day,’” Luis recalls.

“She told us not to overthink things, but rather to give our son love and support and be there for him. That’s the best advice a person can give you, you know, because you're going through so much and your brain is in overdrive.”

Welcoming Little Liam 

A few months later, it was time for Amanda and Luis to meet their son. It was a moment filled with anticipation for Liam’s parents and his care team. Liam arrived December 30, 2024, and his cardiac team was ready.

“When he was born, I got to see him for a few minutes, and the doctors had to take him straight to the fifth-floor cardiovascular intensive care unit to hook him up to monitors to make sure his heart and lungs were doing okay,” Amanda recalls.

Doctors continued to monitor Liam’s progress, and to give him every opportunity to succeed. In a cardiac catheterization procedure, doctors opened the communication between the upper pumping chambers of Liam’s heart, using something called a balloon atrial septostomy. They also placed pulmonary artery flow restrictors into Liam’s heart to help restrict the blood flow to the lungs.

When Liam was 18^-days old, doctors cleared him to go home until his next heart surgery. 

Surgery and Unplanned Setbacks 

At the age of 8.5 months, pediatric cardiac surgeons performed a Damus-Kaye-Stansel procedure, which connects the pulmonary artery to the aorta to provide blood flow to the body. The surgery is done alongside a Glenn shunt procedure to manage pulmonary blood flow.

“The surgery went very well. We were very happy with the outcome,” Miller says.

A day later, things took a frightening turn.

Liam’s oxygen levels dropped. Doctors rushed him to the cardiac catheterization lab and made the decision to put Liam on ECMO support, which is a system that acts as a temporary heart-lung machine, circulating a patient’s blood outside the body to give their organs time to rest and heal. Liam spent more than a month on ECMO. 

“That was a scary time for us as parents,” Amanda says. “To get Liam off ECMO, they had to make sure his lungs were strong enough and it took a long time to finally get to that point.”

Little by little, Liam began to heal and to get stronger. 

Doctors began to wean Liam off some of his cardiac medications and closely monitored his oxygen levels. 

Liam quickly became a hit on the cardiology floor. His family celebrated every milestone with exuberance. The celebrations often brought nurses, doctors and care teams to Liam’s room, hoping to share the joy. 

Every bite of pureed food was a cause for celebration. Every time Liam’s oxygen levels could be safely lowered called for a happy dance. 

Homebound for the Holidays 

Luis remembers hoping and praying to be able to bring Liam home for the holidays and his first birthday.

“I asked God for one thing for Christmas, and he delivered,” Luis says with glee. “I couldn’t have been given a better present.” 

Liam was finally able to play at home with his three older siblings and the family cat.

“They love it,” Amanda says. “They’re always playing with him and making him giggle. It warms our hearts.” 

Liam has continued to make progress – sitting up, reaching for toys, eating some foods by mouth and soaking up all the family love. 

He relies on oxygen in a nasal cannula and he has a feeding tube, but doctors say as he gets stronger, he will not need to rely on those items as much. 

“Based on how sick he was, we are thrilled with his progress,” Miller says.

Liam still has many doctors’ appointments each week. Soon, he will start physical therapy appointments. He also has home healthcare nurses by his side. “He’s such a strong little man,” Luis says proudly. “It gives me goosebumps to see him progressing, growing and getting healthier every day.” 

Liam will return to Johns Hopkins All Children’s Hospital for a final heart surgery between ages 4 and 5.

“We’re hoping to keep him in a bubble for the month before we go into that surgery,” Amanda jokes. She is confident in the care her son is receiving.

“Johns Hopkins All Children's is the most incredible hospital in the world,” Amanda says. “It’s amazing to see how much they really care. I couldn't imagine being anywhere else, because they treat each child as if they were their own and it’s really comforting.” 

Liam’s Laudable Future 

Amanda knows her son’s future will be bright. She suggests he might even become a heart surgeon one day. “He's got crazy hands. His hands are always moving, so maybe he’ll put that to good use, or at least play the piano,” she says with a laugh.

“We’ll be proud of him no matter what,” Luis adds. “The whole medical team here gave him that opportunity. It’s just unbelievable. Sometimes I wake up and I think about how crazy it is that my son is alive and thriving and it’s very emotional.” 

“Our team never forgets what a great privilege it is to take care of other people's children,” Miller says. “Liam is an exceptional example of how kids can overcome anything.”