Marching forward, one beat at a time

When asked to describe her son, Michael, Kathleen Scheibe can’t find the words. But after thinking it through, one sentence sums up the 16-year-old: he has a big heart.

Michael Scheibe’s story has revolved around his heart since before he took his first breath. It began the moment Kathleen had her 20-week sonogram and found out she and her husband, Ray, were having a boy. It was welcome news – they already had a daughter, Kaitlyn, and a baby boy would only make their family complete.

But after the sonographer left the room, the doctor entered with what Kathleen recognized to be a grim look. Something was wrong with Michael’s heart. Initial tests gave him a 50% chance of making it to birth.

“I just collapsed in my Ray’s arms,” said Kathleen. “And for the next three days, I didn’t move off the couch. I really went numb.”

Throughout Kathleen’s pregnancy, Michael’s chances of survival improved. She delivered at Baptist Medical Center Jacksonville via cesarean section and was able to get one look at baby Michael before he was whisked away to the Neonatal ICU at Wolfson Children’s Hospital. The heart defect Michael was born with is called double-outlet right ventricle. It causes the mixing of red, oxygen-rich blood and blue, oxygen-poor blood. Michael also had muscular obstruction below his pulmonary valve.

All things considered, baby Michael was doing well and was able to go home shortly after he was born.

The Scheibes were warned that Michael would have so-called “blue spells” – instances where his heart wasn’t able to circulate blood to the body.

“Once that happened, we were to push his legs to his chest and bear-hug him to force the blood to go through to places that it needed to go,” Kathleen said. If the blue spells lasted more than five minutes, they were to call 911. Thankfully, that never happened, but by the time Michael was 10 months old, the blue spells were happening twice daily.

One month later, at just 11 months old, Michael had his first open-heart surgery.

“When I handed him over, I know my knees buckled,” said Kathleen. “My husband was literally holding me up because I was terrified.”

Eric Ceithaml, MD, a now-retired pediatric cardiovascular surgeon at Wolfson Children’s Hospital, performed the surgery. Dr. Ceithaml said Wolfson Children’s sees between five and 10 cases of Michael’s particular congenital heart defect each year.

“We had to go in and cut out that obstructing muscle, close the hole in the heart, take out the thickened pulmonary valve, and then put a patch on that area,” said Dr. Ceithaml.

A few years later, when Michael was 4, he developed an arrhythmia. An arrhythmia is when the heart beats too quickly, too slowly or irregularly. In Michael’s case it beat too quickly. He had his second open-heart procedure, also performed by Dr. Ceithaml, when he was 6.

During the second procedure, Dr. Ceithaml put in a bioprosthetic valve to replace the pulmonary valve that had been removed years earlier, and froze the area of the heart that was causing the heart to beat too fast.

In total, Michael has had six heart procedures, including the two open-heart surgeries. Kathleen is careful to call each one a repair, not a fix.

“This is a lifetime thing,” she said. “He’s going to need the valve taken care of for the rest of his life.”

Kathleen is grateful for the care she, Michael and the whole family have received from  Wolfson Children’s Hospital since before Michael was born, allowing him to live the life of a relatively normal teenager. Michael now plays the trumpet in his high school marching band, but Kathleen said what really defines him is his compassion for those in need and his willingness to give second chances.

What really defines him is his heart.

“I am so willing to share Michael’s story because it’s a story of hope,” said Kathleen.

Michael was selected as an ambassador for the 30th Annual Wolfson Children’s Hospital Bass Tournament because his story represents where the funds will go in 2019. The Wolfson Children’s Hospital Bass Tournament takes place May 16-18, 2019, in Palatka.