In January 2004 during a routine ultrasound, my wife Stacie and I learned that our son, Luke, would be born with complex congenital heart defects.
In January 2004 during a routine ultrasound, my wife Stacie and I learned that our son, Luke, would be born with complex congenital heart defects. It was an emotional roller coaster to understand the challenges that lay ahead. His future was full of unknowns, and we had no background or education in handling cardiac issues. We weren’t ready to deal with this, so we spent hours and nights studying and researching.
Luke was born with a single ventricle, as well as other issues. His heart was operating at about 75 percent oxygen saturation. His cardiologists in Portland said he would need three corrective surgeries.
Luke endured his first surgery when he was just a few weeks old, and the second one took place just before his first birthday. But after that procedure, his heart function began to decline. Seven months later, doctors tried a catheter procedure, using experimental technology and techniques to slow the decline. Unfortunately that approach didn’t work, and he required immediate surgery. Although the surgery was successful, 11 hours under anesthesia strained Luke’s body, and we found out he had also had a stroke.
Luke with fellow heart transplant survivor and former Pittsburgh Pirates great Kent Tekulve
Over the next year Luke’s heart continued to weaken. His cardiologists said his heart couldn’t support any more surgeries. He would need a heart transplant much sooner than they had hoped.
We began researching pediatric hospitals in search of a team that could best handle Luke’s complex condition. We decided to move the family across the country so that Luke could be treated at Children’s Hospital of Pittsburgh at the University of Pittsburgh Medical Center.
Daily life was a challenge for Luke, but you wouldn’t know it by the smile on his face, his endearing character and positive attitude. Although he didn’t have the energy to run, he still loved to play sports. During T-ball games, he would get his hit and run to first, but he would be out of breath and his lips would turn blue. We would carry him to the next base, and set him down so to ensure he was "safe." Although he didn’t have the stamina for a full day of school, keeping up with his brothers or handling repeated trips up the stairs in our house, he never wanted to be treated differently.
l to r) Luke, brothers Jake, Nate and Josh hiking with their mom Stacie at Mt. Rainier
During a family vacation in late 2009, Luke had an unexpected seizure. He experienced another one several months later, and then in November 2010 he had a seizure so severe that he went into cardiac arrest. Stacie immediately began CPR, and with the help of a Good Samaritan, they were able to save him. He was rushed to the hospital and placed on the national heart donor list.
We were blessed with a tremendous network of friends, neighbors and family. We received support in so many different ways: dinners, carpools for the brothers, gifts and plenty of hugs. Months in the hospital took a toll on Luke’s three brothers, as well as the rest of the extended family.
On Christmas Eve 2010, Luke’s heart function became dangerously strained, forcing him to spend the holiday in the cardiac intensive care unit. It was physically and emotionally draining to watch Luke decline so dramatically, and yet we were helpless to do anything about it. We remained hopeful that Luke would persevere, but we realized we might not win the fight.
Luke receives a visit from Pittsburgh Pirates star Andrew McCutchen at Childrens
On December 29, we received amazing news. After six weeks of waiting, Luke received a Christmas miracle — a donor heart! Talk about a roller coaster — hopes and dreams were offset by the challenge and fear of the procedure. It was hard to celebrate knowing how difficult the decision was for the donor family, but that decision saved Luke’s life.
In spite of a few small bumps along the way, Luke recovered quickly from his heart transplant. A couple of weeks after surgery, he rejoined his three brothers at home and began adjusting to his new life.
Here we are, four and a half years later, and it’s amazing! Luke has fully recovered from his stroke, seizures, surgeries and transplant. He excels in school and plays baseball, basketball, soccer and even flag football. He is developing his public speaking skills as he tells his story. He has shared his ordeal at Heart Walks, with local business leaders and elected officials. At last year’s Heart Ball, he told the audience that he was going to be a professional baseball player. It is awesome that he can dream big, just like every other kid.
We are so thankful for the work of the American Heart Association. Just 40 years ago, children born with the problems Luke had would have been lost. But now they can actually fulfill their dreams. Luke can finally do all of the things a normal 11-year-old boy should be able to do. He can now be the boy that he always wanted to be … and with continued research and development, he just might be a professional baseball player!
The Ball Family speaks at the American Heart Association Heart Ball in Pittsburgh.