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THURSDAY, July 24, 2003 (HealthDayNews) -- Naomi was 4 years old when she arrived in Dr. Fred Epstein's operating room with a brain tumor that had wrapped itself around two arteries.
Hers was not a hopeful case. But Epstein, a neurosurgeon, decided to operate. Twice. Once to relieve the pressure of the bleeding inside her brain and once to remove the tumor.
Naomi survived the surgeries. And when Epstein would visit her as he made his rounds, she would stand jauntily on her hospital bed and announce, "If I get to 5, I'm going to beat my older brother at tic-tac-toe!" Or, "If I get to 5, I'm going to jump rope backward!"
Little did Epstein, now 65, know that decades later he would adopt that mantra as his own during the most difficult struggle of his life.
Twenty-five years after meeting Naomi, he was six months into writing a book on what his young patients had taught him about the need for compassionate medicine. The book takes its title from Naomi's oft-repeated declaration -- If I Get To Five: What Children Can Teach Us About Courage and Character.
Epstein went out for his regular Sunday morning bike ride in Connecticut nearly two years ago. But the front tire caught a depression in the road that threw him forward over the handlebars and onto the pavement.
"The impact knocked my brain against the back of my skull, tearing a blood vessel, which caused bleeding over the surface of my brain," he writes in the prologue of his book. When he regained consciousness after a 26-day coma, Epstein could open one eye partway and could wiggle a toe. He couldn't talk and needed a ventilator to breathe.
Like so many of his young patients, Epstein is now learning all over again how to swallow, talk and walk. His right side is still partially paralyzed, his speech is slurred and he has double vision. But he is determined.
It took six months but, by dictating what he wanted to say to his wife, who then passed it on to co-author Joshua Horwitz, Epstein finished the book that had been dancing around in his head for years.
And while Epstein is adamant that the book, which was released in April by Henry Holt & Co., has nothing to do with his accident, it is hard not to notice the parallels between his life and the heroic struggles of his young patients.
As one of the world's premier pediatric neurosurgeons, Epstein found ways to excise the tumors from children's brain stems and spinal cords that nobody else would tackle. He was, he writes in his book, "the pediatric neurosurgeon of lost causes." He headed up the famed pediatric neurosurgical service at New York University before leaving to create a new neurosurgery center at Beth Israel Medical Center in New York City.
Epstein was, he recalls now, "married to technology," to the tools that helped him and his team increase the cure rate for brain and spinal-cord tumors from 20 percent to more than 50 percent in just a generation.
But his wake-up call for more compassionate doctoring came just before the offer from Beth Israel.
Chris Lambert had been one of Epstein's patients, a 17-year-old boy with a malignant brain tumor that "wouldn't quit," Epstein writes. After Chris died, his mother sent Epstein a poem the boy had written. The poem included the lines "I am struggling, O Lord, to stay alive... And death is very near/I ask you reader, whoever you may be/Take my trembling hand and warm it with care and sympathy."
The poem devastated Epstein, who felt he had strayed too far into his marriage with technology, forsaking the human qualities that Chris had cried out for. When Beth Israel called him to start the Institute for Neurology and Neurosurgery, Epstein vowed to meld technology with compassion in a new center that would offer families the best of both worlds.
Over the years, Epstein estimates, he has operated on 2,000 to 3,000 children and answers every single letter he gets from them. "That takes a lot of time, but I do answer," he says. Naomi is one of the people who write him. She's now in her 30s and works as a grocery store clerk.
Epstein's book has stories of many others who survived, such as Luis Olmedo, an Ecuadorian Indian child with a spinal cord tumor. Luis's heart stopped beating for 29 minutes during his operation, yet he woke up asking for his teddy bear.
There is also Lauren Kathleen Kelley who had the first of five operations on her brain when she was just 9 years old and is now a teenager. And 4-year-old Matthew Brodie, who wore different costumes for his different surgeries. He was Batman, complete with cape and hood, for his third spinal operation.
Then there are the stories of the children who didn't make it, stories that are no less full of humanity for their ending.
Epstein writes about 8-year-old Bobby, who made a list of what he most wanted to do before he died -- ride in a convertible, ride in a fire engine, ride in a cement mixer. He checked the last item off his list -- ride in a float in a New York City parade -- the day before he entered a hospice.
Epstein also introduces the reader to 13-year-old Emily, who was in the terminal phase of brain cancer and knew it. Her parents, however, didn't want to confront the end. Finally, she told them, "I need to go now. I know how much you love me. I've got to go, but you know that part of me will always be here with you." She died that night with her parents and sister by her side.
"I now know that holding a child's hand while he undergoes chemotherapy can be a lot scarier than holding his life in my hands during an operation," he writes in his book.
But hold their hands he did. And then it was their turn to hold Epstein's hand after his accident.
"A lot came to visit me," he says. "That was very, very moving. The kids that came had required a great deal of physical therapy and they were coming to encourage me as I moved down a similar path."
Epstein's main challenge going forward is physical therapy to help him learn to use his right side. "I managed to go through it. I have a long ways to go yet," he says. "I have a ways to go. I have to get there. I have to get there."
More information
For more on pediatric neurosurgery, visit the International Society for Pediatric Neurosurgery or Beth Israel's Institute for Neurology and Neurosurgery.
