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In January 2004, during a routine ultrasound, John and Stacie Ball learned their soon-to-be son, Luke, would be born with a complex congenital heart defect. With limited treatment options available, this unexpected news sent the family on an emotional roller coaster in understanding the challenges that lay ahead. Although surgical techniques have improved, it would only be a matter of time before he would need a heart transplant.
Hours after his birth, Luke underwent testing to assess the condition of his tiny, struggling heart. With only a single ventricle, Luke’s heart was working overtime, operating at a reduced level of about 75 percent oxygen saturation. His parents John and Stacie feared for the worst.
”We had no background or education in handling cardiac issues. We were ill-prepared to deal with this information. We spent countless hours and nights studying and researching,” says John.
Physicians at a high-risk hospital in Oregon determined Luke would need to undergo a series of three corrective surgeries. These procedures would help improve his heart function, which would allow him time to grow and become stronger before a heart transplant was required.
At just four weeks old, Luke endured his first corrective heart surgery. The second surgery took place just shy of his first birthday. Following this procedure, Luke’s heart function began to significantly deteriorate. Seven months later, physicians attempted to mitigate this deterioration through an unplanned surgery, using new technology and techniques. Although the surgery was successful, the 11 hours Luke spent under anesthesia strained his body. Physicians discovered he suffered a stroke.
At only two and a half years old, doctors became increasingly concerned about the continued deterioration of Luke’s heart. Upon further evaluation, physicians determined Luke would need a heart transplant much sooner than they had hoped. John and Stacie immediately began researching pediatric facilities, looking for a team of experts that could best handle the complexity of Luke’s condition.
With many pediatric hospitals to choose from, Stacie and John moved their family across the country to Pittsburgh so that Luke could receive treatment and care at Children’s Hospital of Pittsburgh of UPMC.
”We did a lot of research to determine where to relocate our family. The staff at Children’s has a lot of experience. They have successfully completed more pediatric heart transplants than most hospitals around the world and they perform numerous research studies which would apply to Luke’s situation,” says John. “We did a lot of praying on this one. We ultimately decided that Pittsburgh was the place we needed to be.”
Physicians at Children’s Hospital continued to monitor Luke’s progress, conducting regular echocardiograms and other tests to examine his heart. While his heart function was unstable, specialists were hopeful that medications and therapies would help him forgo transplantation until later in life.
Luke still enjoyed playing baseball and swimming, despite having little energy for prolonged activities. Daily life was a challenge for Luke, but he never showed it—his infectious smile, endearing character, and positive attitude touched everyone he met.
During a family vacation in 2009, Luke unexpectedly suffered a seizure. Following a second seizure months later, Luke was admitted to Children’s for nearly a week as a team of neurologists and cardiologists sought to determine if these episodes were driven by poor cardiac output or neurological problems that resulted from his corrective surgeries.
In November 2010, Luke suffered a seizure so severe that he had to be resuscitated. He was rushed to Children’s and placed on the national heart donor list days later.
“We realized that the transplant needed to be done. There was no other choice. Luke needed a heart transplant to survive,” says Stacie.
In between treatments, Luke enjoyed spending time in the hospital’s playrooms and taking part in the many activities planned by Children’s Child Life specialists. He also took pride in participating in the hospital’s Beads of Courage® program. Receiving a bead for every needle stick, x-ray, and milestone, Luke proudly hung these multi-colored necklaces from his IV pole.
“Although Luke experienced significant physical limitations due to his heart condition, he never let this dampen his spirits,” says Steven A. Webber, MBChB, chief of the Division of Pediatric Cardiology at Children's. “He handled the numerous tests and procedures with incredible strength, displaying a maturity far beyond his years.
In December, Luke was thrilled to meet several of his sports heroes including his favorite hockey player, Max Talbot. Although it was difficult spending the holidays at the hospital, Luke and his family’s spirits were lifted by special visits from the Penguins, Pirates, University of Pittsburgh men’s basketball team, and several other local college and university groups. Regular visits from his three brothers also helped him momentarily escape from the everyday anxieties associated with lengthy hospital stays.
The week before Christmas, Luke’s heart function became dangerously strained, forcing him to spend the holiday in the hospital cardiac intensive care unit (CICU). It was physically and emotionally draining for John and Stacie to watch their son deteriorate so dramatically; they felt helpless. Despite this setback, the Ball family was hopeful that Luke would persevere.
On December 29, 2010 Stacie was awoken by a phone call at 4 a.m. After six weeks of waiting, Luke had received a Christmas miracle—a donor heart!
In spite of a few small bumps along the road to recovery, Luke was able to bounce back from his transplant. Two weeks after surgery, he was able to rejoin his three brothers at their home in Cranberry Township.
“We were in a situation where we realized we wouldn’t be staying in the Pacific Northwest because they didn’t have the capabilities we needed. We looked everywhere in the United States and ultimately chose Children’s here in Pittsburgh,” says John. “We certainly were not disappointed in our decision to move here. We never once questioned that we had done the right thing, or come to the right place.”
Luke’s new heart means a new life and new opportunities. Now almost seven years old, he will return to Children’s regularly for check-ups. In the meantime, Luke is looking forward to finishing kindergarten and keeping up with his brothers. He plans to return to the baseball field in the spring and is looking forward to finally having the energy to play with his brothers and friends on the soccer field and in the back yard.
“We can’t put into words how thankful we are for this new life for Luke and what it means to our family,” says Stacie.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
Children’s Hospital of Pittsburgh of UPMC
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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