Rare Diseases

Boy born with heart in wrong place thriving after 3-D printing-guided surgery

  • Ethan Bradley, 9, was born with a severe form of Heterotaxy syndrome, a rare defect that affected his heart function and oxygenation levels. His mom, Katrina Bradley (who is pictured here with Ethan), said he's "a completely different kid" after undergoing a 3-D printing-guided surgery in August 2016.

    Ethan Bradley, 9, was born with a severe form of Heterotaxy syndrome, a rare defect that affected his heart function and oxygenation levels. His mom, Katrina Bradley (who is pictured here with Ethan), said he's "a completely different kid" after undergoing a 3-D printing-guided surgery in August 2016.  (Courtesy Cleveland Clinic)

  • ethan bradley post operation

     (Courtesy Cleveland Clinic)

  • ethan bradley healed scar

     (Courtesy Cleveland Clinic)

Growing up, Ethan Bradley, of Grafton, Ohio, was never able to play with his friends during recess or fulfill his dream of joining a basketball team due to a rare condition that left him blue, exhausted, and gasping for air with each breath. But Bradley, now 9, has hopes for doing all of that and more after undergoing a 3-D printing-guided surgery. The operation helped correct Ethan’s lifelong defect, which was marked by his heart being positioned in the wrong place and his oxygen levels hovering around only 55 percent.

“It is absolutely incredible,” Katrina Bradley, Ethan’s mom, told Fox News. “We went from having this sick child who spent the majority of his day sitting on the couch or sleeping because he was just too tired or out of breath to do anything, and now he’s just running around the house and excited … it’s just a completely different kid.”

‘He’s got a lot of fight in him’

During her 20-week ultrasound, Katrina learned her second child and only son, Ethan, had a heart defect so severe that he was only given a 1 to 5 percent chance of survival.

“We did not have high hopes,” she recalled, “so we made it through the pregnancy not really buying all the baby stuff or getting excited because we weren’t really thinking that he would survive.”

But when Ethan was born on Aug. 2, 2007, he seemed normal — at least from the outside.

“He was born kicking and screaming, and we were like, ‘He’s got a lot of fight in him,’” said Katrina, 33, also mom to daughter Callie, 13.

But inside, everything was awry.

“He had amongst the most complicated of heart defects, and everything was in the wrong place, and the wrong size, and connected backwards,” Ethan’s cardiologist Dr. Kenneth Zahka, who specializes in congenital heart disease at the Cleveland Clinic, told Fox News.

Doctors diagnosed him with Heterotaxy syndrome, a term to describe a set of birth defects wherein the internal organs are abnormally arranged in the chest and abdomen.

“They’re not considered very common, but they’re considered very complex,” Hani Najm, chairman of pediatric and congenital heart surgery and Ethan’s surgeon, told Fox News of the defects.

In Ethan’s case, his lungs never fully formed, and the heart itself grew incorrectly. He has several complex diagnoses, as his case is so unique, Najm said.

Healthy hearts have two distinct chambers on the left and right side of the organ, but in Ethan’s case, it was as if he had two right sides and no left. Plus, his lung arteries never formed, which affected the blood flow to his lungs and caused insufficient oxygen saturation levels.

At 1 month old, Ethan underwent open heart surgery and spent his first 90 days of life in the pediatric intensive care unit. Katrina and her husband, John, first carted their newborn home with feeding tubes and an oxygen tank, but just one month later he went into heart failure again. They had to return to the hospital for an additional heart surgery and a two- to three-month stay at the hospital.

“After this heart surgery, he actually improved, so we were kind of getting into the hang of things and knowing what to expect,” Katrina said. “Basically, our lives just became going to the hospital and doctor, and taking care of a sick baby.”

‘It is not common that we do this’

Following the second surgery, home therapies helped Ethan regain his strength and grow. But he underwent 16 additional catheterizations, or caths, an invasive procedure used to diagnose and treat cardiovascular conditions, and he continued to struggle with exhaustion due to his low oxygen levels.

As he aged, his oxygen levels continued to drop, and he began carrying oxygen in his school backpack.

Beginning around age 7, he began noticing that he was different from the other boys at school, who could run and play at the park while he had to sit on the sidelines. Ethan couldn’t do an activity for more than two minutes because he’d get too tired.

“He did emotionally start distancing himself from other people, and a lot of it was he couldn’t keep up,” Katrina said.

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By the time he turned 9, Ethan knew he was disabled, and he and his parents wanted a better life for him.

That’s when Zahka, who has been treating Ethan since birth, turned to his colleague Najm for a potential solution.

For the Aug. 10, 2016 procedure, Najm would separate the atriums of his heart without affecting the ventricles, the lower heart chambers. The aim was to reroute Ethan’s blue blood to his lungs and his red blood to the aorta, the uppermost chamber of the organ. Carrying out the procedure successfully required general anesthesia, use of a heart-lung machine, and a team of 11 people, including nurses, surgeons and technicians.

“The actual separation of his circulation on the inside is kind of novel — it is not common that we do this,” Najm said. “But it is something that I was able to innovate. Because of the 3-D printing, I was able to look at it, and sit in my office and decide what I needed to do.”

Zahka said one of the risks of such a rare and complex operation on someone who had several heart surgeries before was that the organ could stick to the chest wall.

In Ethan’s case, the surgery was uneventful.

“For Ethan, somebody was looking after him or he got the best operation because all of this came together,” Zahka said. “His lungs worked, his heart muscle worked, the blood flow through the artery worked. [Surgeons] were able to control any kind of bleeding, and they were able to close up the chest and bring him back.”

‘A new man’

The day following his surgery, Ethan was weaned off his ventilator and returned home in about a week. In six weeks, he was fully recovered.

“He’s a new man,” Zahka said.

Although Ethan will likely need additional surgeries as he grows, and he continues to see Zahka for follow-up appointments every two to three months, his latest surgery has him breathing easier and hopeful to engage in more of the activities his peers have enjoyed throughout their childhood. Since the operation, Ethan’s oxygen levels have reached around 95 percent, which is normal, and his once-blue skin now contains a healthful rosy-pink hue.

Katrina is hopeful, too, that Ethan can go to more friends’ birthday parties and play on the basketball team he’s always dreamt of joining.

First on the list is learning to ride a bike, which he’s tackling during his weekly physical therapy sessions.

“He’s never had the endurance to pedal long enough to ride a bike,” Katrina said. “That’s what we’re working toward because in the summer, we drive through town and see all the kids his age doing that.”