Preemie Baby with Rare Heart Defect Has Life Saved by Surgery That Pushed 'the Limits of What's Possible'
"My biggest hope for Alex is that when he's 16 and looks in the mirror and sees that scar on his chest, he looks back with gratitude," says Dr. John Cleveland
A 4-month-old baby has been given a second chance at life thanks to a group of Los Angeles doctors and their innovative surgery.
Alex Romero was born on Oct. 26 at 26 weeks and was soon diagnosed with a rare heart defect called total anomalous pulmonary venous return, his parents Alejandra Romero and Christopher Corona tell PEOPLE.
Because the condition is life-threatening, doctors knew early on that Alex would require open-heart surgery. However, at 2.1 pounds, he was too little to immediately operate on.
For over two months, the team at Children's Hospital Los Angeles (CHLA) kept Alex alive with a stent connected to a vein in his liver — a technique that has only been globally documented ten times — before officially repairing his heart on Jan. 5.
Now on the road to recovery, Alex's mom says she can't wait to finally bring her son home.
"I take it day by day, and I just try to think positive," Alejandra, 21, explains. "I'd rather him be here and get to 100% than take him home early and have him only be 5% okay."
Alejandra says her son's premature birth and heart defect "came as a shock", especially because her scans two weeks before his birth confirmed that "everything was good."
At the end of October, doctors at Kaiser Permanente South Bay Medical Center discovered Alejandra had a premature rupture of her amniotic sac and performed a C-section, before intubating Alex and admitting him to the NICU.
"It was very difficult. I didn't get to hold him for a while," Alejandra recalls. "When you're pregnant, you think you're gonna have a healthy pregnancy and take the baby home, but in my case, it was different."
After Alex's heart defect was discovered, he was transferred to two local hospitals, before making his way to pediatric heart surgeon Dr. John Cleveland at CHLA.
Cleveland says he knew surgery was inevitable, as the heart condition — if left untreated — could cause organ damage and death, but he was confident his team could save Alex's life.
"Alex is one of those situations where we had an opportunity to do something different and to really push the limits of what's possible in order to get an outcome," Cleveland tells PEOPLE.
Dr. Sarah Badran, an interventional cardiologist at CHLA, played a crucial role in that desired outcome by identifying another pathway for Alex's oxygenated blood to travel through.
Since his pulmonary veins, which carry blood from the lungs to the heart, were blocked, Badran's idea was to open a vein in Alex's liver and put in an adult stent to allow the blood to flow properly.
The procedure was performed on Nov. 12 and ultimately bought Alex seven more weeks until he reached 3.5 pounds and was ready for the heart surgery in early January.
On that day, Cleveland had to cool Alex's body to 64 degrees Fahrenheit and stop the flow of blood before lifting his heart — which he notes was the size of a grape — out of his body just enough to reattach the unconnected veins.
"It really offers such an incredible opportunity to kind of make these children whole, and fill the gaps where the families would have been kind of shattered," Cleveland says. "There's something incredibly satisfying about that and fulfilling about that."
"Whenever I open the chest of a really small child, I always take a moment... because you oftentimes lose perspective for how small things are," he adds of working on the tiny organ. "It's so incredible that we're here, from a scientific standpoint, to be able to do things like that and do it with confidence."
In the time since that day, Alex has been showing incredible progress, his mom says. He now weighs more than five pounds and no longer requires a breathing tube.
"He's not eating on his own yet but we've come a long way," says Alejandra.
"It's definitely been a process," adds Christopher, 22, who notes that he can't wait to watch his son "grow, and watch him become who he'll become in life."
That feeling is mutual for Cleveland, who believes Alex has a "great prognosis" and will go on to "live a normal life."
"My biggest hope for Alex is that when he's 16 and looks in the mirror and sees that scar on his chest, he looks back with gratitude and it motivates him to move forward in his life to go out and care for others," he says.
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"To know that [Alejandra and Chris] are now going to have a child who has a normal life expectancy is just, it's encouraging," he continues. "It makes me more bold in my endeavors to help push our field forward and find other solutions to children who don't have them."
As Alex works towards a full recovery, Cleveland says he and CHLA plan to publish a report on the surgery in a cardiology journal in hopes that it will help change the future of heart surgeries.
"The goal is to get the word out... I may never see another one of these in my career, but people throughout the world will continue to see this," he says. "And I think it'll encourage them that when those children show up, to not give up, to maintain that sense of hope that was born out of creativity, so that they can give those children the life that they deserve."
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