Born With Three Heart Defects, Bowen is Now Thriving As He Approaches His Third Birthday

Just shy of his third birthday, little Bowen Warren has already lived up to his name, which literally means “little warrior, small victorious one.” He’s had to overcome a lot in his short life, and that journey has been as his name would suggest: a battle.

In February of 2013, Emily Warren was 29 weeks into her pregnancy when her water broke unexpectedly. Until that point, she had no reason to suspect there was anything wrong with her baby. She could have never imagined the nightmare that was about to unfold.

Bowen in ShadesShe was immediately rushed from her hometown of Butte, Mont., to Community Medical Center in Missoula. There, doctors were able to delay the birth and Warren was hospitalized for the remainder of the pregnancy. Almost four weeks later, Bowen was born.

“He was blue and his vitals weren’t what they should have been,” said Warren. “The whole experience was a shock.”

It was then that doctors detected a heart defect, but not just one – three heart defects. Bowen was born with a combination of Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) and pulmonary stenosis. Essentially, his two main arteries formed in opposite places, he had a hole in the lower chamber of his heart so his blood wasn’t circulating properly, and he had a narrow pulmonary valve. Just as soon as he entered the world, Bowen was faced with the fight for his life.

“In a normal heart, all the blue, non-oxygenated blood is on one side and all the red, oxygenated blood is on the other side,” said Dr. Michael McMullan, pediatric cardiothoracic surgeon at Seattle Children’s. “When a child has transposition, like Bowen, the blue blood just goes in a circle and so does the red blood. That’s bad because the blood is unable to oxygenate and circulate properly through the body. He needed expert care immediately.”

Bowen was immediately airlifted to Seattle Children’s for treatment, the only center in the Pacific Northwest that could care for Bowen’s complex heart condition.

“Instead of heading home with our baby, we were headed to Seattle,” said Warren. “It was overwhelming. Only nine hours after birth, I was on a plane with my baby.”

A long way from home

At only 2 days old, Bowen underwent a procedure to help with the circulation of blood in his heart called cardiac catheterization. Instead of requiring surgery, many heart conditions can be treated in Seattle Children’s state-of-the-art cardiac catheterization laboratories. Bowen would need multiple procedures to fix his heart condition, including open heart surgery, but first doctors needed to correct his blood circulation to help him to grow and stabilize.

2013-03-18 Bowen on the floor“There was a lot of waiting, watching and waiting,” said Warren. “It was heart breaking not knowing what the future would hold.”

Almost eight weeks later, close to what was supposed to be his due date, Bowen went into the operating room for open heart surgery. Hours later, he was in the recovery room doing well.

“There are few centers in the U.S. that have a team approach like Seattle Children’s Heart Center team,” said Dr. Jonathan Chen, director of Seattle Children’s Heart Center, which is one of the busiest centers in the country. “Our comprehensive approach allows us to create a unique treatment plan for each of our patients. For patients like Bowen, who require complex procedures, it takes a team of experts to heal the littlest of hearts. For every patient, we create a personalized plan supported by the most advanced imaging techniques available, including cardiac MRI (magnetic resonance imaging), echocardiography and 3-D imaging. We knew with Bowen he’d require an innovative treatment.”

Right before Memorial Day weekend, the family was discharged.

They would need to eventually come back to Seattle Children’s for another surgery, but they were optimistic and anxious to get back to Montana. Three-month-old Bowen was headed home for the first time since he was born.

Innovative 3-D model of Bowen’s heart provides road map for complex procedure

Every three to four weeks, the Warren family traveled to Missoula to meet with a cardiologist who worked closely with Seattle Children’s to track Bowen’s progress. While Bowen needed another surgery, his Seattle Children’s care team enlisted the assistance of Dr. Stephen Seslar and imaging specialists to help determine which surgery would be best for his little heart. Seslar worked to develop an innovative, 3-D model of Bowen’s heart created from a 3-D printer that looked identical to the real thing.

Bowen 3D Print Heart (2)
3-D printed model of Bowen’s heart

“It was incredible that we were able to scan his heart and make an exact model,” said McMullan, who performed the surgery along with Chen. “This allowed us to practice ‘operating’ on the model heart so we could see how the different operations would work for him. From that we selected the best option.”

In July 2014, the time came. The Warren family headed back to Seattle for an incredibly complex procedure called a Nikaidoh where surgeons would correct Bowen’s three heart defects.

“It’s not a common operation,” said Chen. “There are very few centers in the U.S. that have the expertise to do the Nikaidoh.”
By practicing on the model, doctors were able to take the guess work out of the operation. They knew exactly where incisions should be made and could plan for any potential problems that may have occurred in the operating room.

“The model allowed us to literally hold Bowen’s heart in our hands,” said Chen. “Operations like this, which are complicated and involve a lot of decision making paths, involve a whole team of experts at all levels – surgeons, cardiologists, imaging specialists, etc. Together, and with the model, we’re improving the efficiency of the procedure and decreasing time in the operating room.”

“He’s my little cowboy”

Bowen CollageThe Nikaidoh operation was a success. Bowen recovered quickly and was able to leave the hospital in less than two weeks.

His little heart was finally put back together – no holes, a bigger valve and arteries in the right place.

“We were thrilled that the operation was a success, and from then on I’ve called him my cowboy,” said Warren. “The doctors used bovine material to help repair Bowen’s heart, which is ironic because Dr. McMullan was wearing his cowboy boots during Bowen’s surgery. We had a good laugh about it.”

Today, Bowen is almost 3 years old and his outlook is bright.

“If he ever wants to ride a horse, he can do it,” said McMullan. “That’s why we do what we do. We want kids like Bowen to be able to live their lives however they want to live them.”

Warren adds, “You wouldn’t know about Bowen’s rocky beginning if it wasn’t for the scar on his chest. He’s a smiling, outgoing boy with no limitations. As a parent, you just have to remember there’s always hope.”