There are spots in his brain, Denise told John. White spots, where there should be gray.
After the game, the umpire flew home. The next day, when his oldest son disappeared into an MRI cylinder, John held tight to the boy's foot. The diagnosis was ALD. A year to live. No cure.
But there had to be something. John and Denise flew to Baltimore to talk with Dr. Hugo Moser, a renowned ALD specialist. The white-haired doctor with the German accent told the Hirschbecks about experimental treatments, including a restricted diet and a special oil. Moser also said there was a doctor in Minneapolis who did bone marrow transplants. A transplant might give John's body the enzyme his faulty gene couldn't produce -- the enzyme that would keep toxic fatty acids from damaging his brain.
John and Denise Hirschbeck sat side by side in Moser's office at the Kennedy Krieger Institute, where blood samples from their four children -- two sons, two daughters -- had already been shipped and scrutinized. It was early in the conversation, and Moser hadn't yet told the Hirschbecks the most terrible news. It wasn't just John. Their daughters, 3-year-old Erin and baby Megan, were ALD carriers. Even worse, Michael, their 5-year-old, had the same disease as his brother. But before Moser could broach the subject, John broke in.
What about the blood work?
Years later, Moser would still remember how the umpire cried. How he sobbed, inconsolable. How he held the doctor's hand and begged him to say it wasn't true, that he wasn't going to lose both sons, not John, not Michael, too.
I'm the luckiest man in the world. Isn't that what John Hirschbeck had told his priest? Four healthy kids, beautiful home in a comfortable town, umpiring in the big leagues, a great marriage.
She's the easygoing one, they agree, and he has the temper, but in many ways John and Denise Hirschbeck are the same. They met on a beach in Puerto Rico -- she was a flight attendant, he was working winter league baseball -- and were married two years later. "The right hand and the left," a friend calls them. They are happier sitting by the fireplace or playing with their kids than going out at night. They treasure their privacy in Poland, the small Midwestern town where Denise grew up. The Hirschbecks are generous with their children, affectionate and protective. They often speak in unison, her sweet, crisp voice blending with his deep one.
The disease, the doctors told them, was tough on marriages. How could it not be? You wake up in the morning and what is there to be happy about?
John: "People would say, 'Well, you two need to go out to dinner.' But what are you going to talk about at dinner? 'How's Michael doing today?' Well, his hair started to fall out from chemo, and he's on new medication. 'What about John?' I'm not sure if he's seeing the same or if he's having trouble swallowing now. Did we get to the cemetery? Did we get the plots picked out? Nothing's happy. Nothing. You wake up every day, every single day, with that sick feeling just wrenching your stomach."
The man didn't just love his sons, understand. He admired them. The way little John enjoyed every minute of life, every tractor-riding, Pee-Wee baseball-playing second. The way Michael took things in stride that would tear apart most adults.
Sometimes the umpire was in awe of Michael's guts. Sometimes he wished he lived every day to the fullest as much as little John did.
Tests and more tests
Everywhere the older brother went, the younger brother followed. In the spring of 1992 they went to a hospital at the University of Minnesota, home of a pioneering children's bone marrow transplant program.
Every other week the Hirschbecks would make the 800-mile trip to Minneapolis, first for John's tests, then Michael's, then John's again. Michael showed no symptoms, but John, already disoriented and confused, was getting worse quickly. His mom would ask him to go in the basement and get something; he'd forget where the basement was. "He'd have such a troubled look on his face," said Mary Ina Jones, his maternal grandmother. "He looked at you as if to say, 'Help me, I don't know what's going on.' And you just put your arms around him and said, 'You're going to be OK, God loves you, and we're taking care of you.' "
John and Denise wanted little John to have a bone marrow transplant. It wouldn't be a cure, the doctors warned -- just a way, maybe, to keep the disease from progressing. But there was a complication. Little John had too much pressure in his brain; plans for a transplant were put on hold while doctors prescribed drugs to reduce it. The umpire buried his head in his hands. "My son is going to die," he told a friend.
Denise, armed with medical books and donor registry statistics, kept after the doctors. When can John have a transplant? she begged them. If not now, when? John was the confident older brother, Michael the tag-a-long puppy, but all at once, in the summer of 1992, everything changed. It was Michael whose body was strong enough for a transplant, Michael whose sister Megan was a genetic match, Michael who slept while marrow dripped through a tube into his body. In the hospital, John visited his brother and hung back, transfixed by the sight of Michael's bald head and puffy face. "You're going to have a transplant too," Denise told John. Back in the hotel room, she assembled a makeshift kitchen to cook the low-fat foods recommended to fight John's disease. She plugged in an electric skillet to make chicken breaded with fat-free cornflakes. She scrubbed dishes in the bathroom sink. She lost 15 pounds, because how could she eat food that her son couldn't?
It was Michael who got the transplant, but even that was a risky bet. The doctors had faced a choice between two donors: Michael's sister, who was an ALD carrier, or a stranger, whose marrow was more likely to be rejected by Michael's body. The first choice might not stop the deadly disease; the second might kill him anyway.
That was the summer Michael learned to love games of chance, the summer of cards and chemo and IVs and Trouble. Even with his sister's marrow, the side effects of the transplant were brutal. Mark Hirschbeck, the uncle whose visits usually perked up Michael's spirits, could see the nervousness in his nephew's eyes. "He wouldn't let on to anybody," said Mark, who is also a major-league umpire. "But I knew it was bad when he said he was too tired to play with me." Sometimes the only thing Michael felt like doing was lying in bed and watching baseball. Not cartoons or movies; Michael preferred baseball.
The Umpire's Sons
How do you survive the death of a child? How do you go on knowing another child shares the same genetic disease? When you've traveled umpire John Hirschbeck's journey, being spit upon is just a footnote.
We've upgraded our reader commenting system. Learn more about the new features.
The Baltimore Sun encourages civil dialogue related to our stories; you must register and log-in to our site in order to participate. We reserve the right to remove any user and to delete comments that violate our Terms of Service. By commenting, you agree to these terms. Please flag inappropriate comments.