He’s Got Game
Rare Heart Disease
Leads to Transplant for Future Hoopster
Eleven-year-old Javon Johnson would like to follow in the footsteps of his brother, Steve, who plays basketball for Olivet College
However, before the age of three, during a routine visit to the doctor for a hernia problem, it was noticed that Javon’s EKG didn’t look right. So doctors began to monitor Javon’s heart. By all outward appearances he was a healthy looking young boy, but by the time Javon was four, after a year-and-a-half of tracking, he showed symptoms indicating that his heart was giving out: shortness of breath; a weak, thready pulse; a loud murmur; a distended belly caused by an enlarged liver and the accumulation of fluids; as well as weight loss due to lack of appetite and circulation problems.
“He had never been sick until after something wrong showed up on his EKG,” said Javon’s mother, Lawanda. “But a year later, he was in the hands of God and the doctors at Children’s Hospital.”
Javon had a rare and lethal heart disease called restrictive cardiomyopathy, a condition in which the heart contracts well but does not relax well. As a result, the heart can’t accommodate the blood coming into it without a huge rise in filling pressure.
According to Dr. Henry Walters III, who heads up the Department of Cardiovascular Surgery at Children’s Hospital, “A heart should receive blood with open arms, and it should fill without a high spike and undue pressure. Otherwise, you’ve got a real problem, as was the case with Javon.”
So he was brought in for evaluation before a group of 15 Children’s Hospital professionals, including cardiologists, pediatricians and surgeons. After considering Javon’s echo cardiogram, heart catheterization, EKG, clinical information and more, the group recommended a heart transplant.
So the search for a donor heart began. Meanwhile, Javon felt well enough to be at home, and his parents were outfitted with beepers so their son could be ready at a moment’s notice to go into surgery when a heart that was a good match became available.
“During that time, Karen Kaiser, the transplant coordinator at Children’s, was just incredible,” said Mrs. Johnson. “She would call me with new information about transplants and send me news of success stories she found on the Internet. She was so sweet.”
Finally, a heart for Javon became available in October of 1998.
After considerable preparation, Dr. Walters began the operation by making an incision through Javon’s breast bone, spreading it apart and opening the sacks around the heart. Then, just as the donor heart was entering the building, he put Javon on “bypass” with a heart-lung machine to keep him alive after depriving the blood supply to Javon’s diseased heart.
Dr. Walters then cut out the old heart leaving behind four points of attachment, or “cuffs,” for the right atrium, left atrium, pulmonary artery and the aorta.
Javon’s new heart had been donated in another state, put on an airplane and delivered to the hospital by ambulance with lights flashing and sirens blaring. Packed in ice and transported in a state of “cold ischemia,” without blood flow, oxygen and nutrients, time was of the essence.
As soon as the donor heart arrived in the operating room at Children’s, Dr. Walters began to remove some of its tissue to create corresponding cuffs for attachment to the portions of Javon’s old heart that were left behind.
It took about 45 minutes to complete a running suture line to sew in Javon’s new heart, start blood flowing to it and get the heart functioning properly.
“From the point of view of cardiac function, Javon should be able to play competitive sports,” says Dr. Walters. “However, we would first put him through an exercise test to be certain he’s able to generate increased cardiac output with activity.”
According to Dr. Walters there is no intrinsic danger to young heart patients who “push it.” But it isn’t as though there aren’t other risks. They must be monitored for rejection and serious infection. However, the absence of recurring rejection problems early on is a good indicator for the prospect of long-term health.
And what about Javon’s parents? How were they able to cope with their son’s illness?
“We couldn’t have done it without the excellent care our son received at Children’s Hospital,” said Javon’s mother, Lawanda. “Every time I called with a question, they called me right back. And Joanne Dupuis even brought the Detroit Pistons in to meet Javon. You would not believe how that lit up my child’s face.
“One thing about Javon, though,” she said. “He may wind up playing basketball some day, but if he thinks he’s going to play football, he’ll have to get by me first.”