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Journey to Healing: Jude Netherland

When 4-year-old Jude Netherland undergoes a heart transplant, his medical team will face a procedure unlike any of the 320 previous life-saving surgeries that have been performed at Arkansas Children's Hospital.

"It's kind of like trying to put a Chevy engine into a Ford," Dr. Elizabeth Frazier told his mother, Fallon. "It can be done, but it's a very difficult process."

Arkansas Children's Hospital - Patient Stories - Henry Toth

Jude Netherland and his mother, Fallon, pose in front of an Angel One Transport helicopter, which delivered the 4-year-old to life-saving care after his birth.

Jude was born with a different kind of heart. Veins that should be on the left are on the right. The separation usually present in the atrium isn't there. Nor is a pulmonary valve. These traits are the result of a complicated anatomical defect called heterotaxy syndrome.

A couple of hours after Jude's birth at a hospital in Bastrop, Louisiana in 2010, nurses whisked him away from his mother's arms as they realized something wasn't right. He was having problems breathing and seemed blue. They told his family that they were calling Angel One Transport to take him to the only place in the region that could address his condition, Arkansas Children's Hospital.

"It hit us like a ton of bricks," says Jude's mother, Fallon. "We had no idea what was wrong. When he was born they said he was healthy, and we'd had no indication otherwise when I was pregnant."

His father, Justin, quickly drove to Little Rock to be at the side of Jude's neonatal bassinet. Fallon joined them when she was discharged a few days later.

At ACH, doctors diagnosed Jude with heterotaxy and asplenia. The conditions mean his liver and bowels are arranged differently, as well, and he was born without a spleen. Heterotaxy is rare, accounting for just 3 percent of all cases of congenital heart disease.

While awaiting a heart transplant, Jude and his mom spend time together playing and making crafts in his room on the ACH Cardiovascular Intensive Care Unit.

Today Jude has already endured more than a dozen surgeries, including five heart procedures. Now he and his family are waiting for an especially important one – the heart transplant.

Since that first day at ACH, he has been under the care of Dr. Frazier, a pediatric cardiologist who is also medical director of the hospital's transplant program.

"Jude is a very sick child now," Dr. Frazier says. "His quality of life is severely reduced, and transplant is really the only option."

In 2013, ACH conducted 20 transplants through the hands of Dr. Michiaki Imamura and Dr. Takeshi Shinkawa. This year, 10 children have already received new hearts through the gift of donor organs. The selfless act of parents facing tragic situations gives children like Jude a new chance at life.

Arkansas Children's Hospital is in a unique position, centrally located in a five-state region from which organs can be donated. This benefits patients waiting because transplants happen quicker since the hospital's transport team can fly 1,500 miles in any direction to retrieve a new heart for a child.

While Jude awaits "the call" he spends his days with Fallon on ACH's Cardiovascular Intensive Care Unit (CVICU). His father, Justin, and 8-year-old brother, Jace, are his cheerleaders back in their hometown of Crossett, while Justin works to support the family.

Jude Netherland, ACH Heart Transplant Patient

The face of a child who doctors say will see a dramatically improved quality of life thanks to the miracle of organ donation.

Jude's door on the CVICU is plastered with colorful marker drawings, and superhero figures litter his beside. (The Hulk and Wolverine are his favorites, he's quick to point out.) Jude is often seen ambling through the hallways as Fallon pushes his IV pole at his heels.

"These forms of physical therapy are very important for kids while they await transplant," Dr. Frazier said. "We want a child like Jude to be in the best shape possible when a donor heart does become available. Even on a limited basis, those walks are important."

While there is no way to tell how long a child will wait for a heart transplant, the average candidate at ACH is listed for about three months before an organ is donated. Many wait as long as six months, though.

Dr. Frazier expects that because of Jude's complicated anatomy, his recovery will take time and require patience – which can be difficult for any pre-schooler, of course.

"We believe he will progress nicely, and be a whole new child," Frazier said. "But that doesn't come instantly. It requires a lot of work."

Jude's support network is just as ready as he is for the day that the "Chevy engine goes into the Ford."

"It is exhausting being away from our family, though everyone at ACH has gone out of their way to make us comfortable and ease the challenges," Fallon said. "It's a roller coaster ride, for sure."

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