Meningitis Scare Brings Healthy Kid to Brink
Nathan has been chosen as one of five Golisano Children’s Hospital Miracle Kids for 2012
May 17, 2012
When Julie VanDeVoorde was growing up, a neighbor of hers died of meningitis. So when her 5-year-old son, Nathan, complained that his neck hurt, spiked a high fever and began vomiting, a little voice in the back of her head wondered if these same symptoms meant the same condition.
“My ‘mother gut’ was telling me that things weren’t good,” said Julie, who brought him to the pediatrician’s office, where multiple tests showed nothing serious. But Nathan was up throughout the night, inconsolable. And by 8 a.m. he had a rash all over his body, his fever had hit 104 degrees, and he felt like he was falling even though he was lying down.
Dave VanDeVoorde yelled for Julie to call 911. “His eyes were like saucers and he started to stumble around the house,” he said. “It’s hard to describe how helpless I felt and how terrified I was.”
About 10 minutes later, when the ambulance arrived, Nathan was calm and alert, and could even identify the color of his father’s brown shirt. But a CT scan, taken immediately after being rushed to the pediatric emergency department at Golisano Children’s Hospital at the University of Rochester Medical Center, showed that his brain was swelling, raising the pressure inside his skull to nearly five times the normal force. That’s when more than a dozen physicians swarmed in and swooped him into the Pediatric Intensive Care Unit, where they inserted a breathing tube, as well as a catheter into the brain to measure the increased pressure. Within hours, Nathan was in a medically induced coma to help his brain recover from the illness – which by this point had been diagnosed as encephalitis with meningitis, inflammatory diseases of the membranes that surround the brain and spinal cord and are caused by bacterial or viral infections.
Dave and Julie will never forget the image of their son hooked up to a ventilator in a room packed with beeping machines, wrapped in a cooling blanket, motionless.
“It was a complete, tortuous waiting game by then,” said Julie. “The hardest part for me was trying to understand how our child could be so perfect and then so sick in such a short period of time. How does that happen?”
Relatives from in town and out of state rushed to the hospital to be with the family and to help take care of Nathan’s 6-year-old sister, Natalie, and 2-year-old brother, Jake.
Over the next 10 days, Dave and Julie also found strength and support from Jeffrey Rubenstein, M.D., M.B.A., professor of Pediatric Critical Care at Golisano Children’s Hospital, who was in charge of Nathan’s case. “He not only became our physician, he became our true friend,” said Julie.
Nathan’s first sign of communication came on the fifth day at the hospital, when he grasped a nurse’s hand. The next day, he grasped his parents’ hands and opened his eyes every now and then, and the day after that, he turned his head when he recognized Julie’s voice and tried to smile. “It was the best feeling,” she said. “My baby was back. That’s a moment I’ll never forget.”
The day Nathan went off the ventilator, about 10 rounding physicians came into his room together to help celebrate. “Nathan touched a lot of people and so did his parents,” said Dr. Rubenstein. “His recovery was amazing. It was everything we were all hoping to see.”
Less than two hours later, Nathan, surrounded by superhero-themed toys and balloons, whispered, “Jake says ‘poop’,” and grinned. Everyone in the room, once uncertain whether he would live, let alone talk again, laughed and cheered that he remembered one of his brother’s favorite words.
Day by day, the triumphs continued – and didn’t stop even after returning home. Nathan was expected to need months of therapy and rehabilitation, but he was taking his first steps the day after he left the hospital. He had occupational therapy only once, physical therapy just three times, and 17 days later was back in school. The day after that, he rode his bike around the neighborhood.
At follow-up appointments and random visits to the hospital to say hello to those who helped him get better, Nathan spends time in the indoor-outdoor play area, called the Christie Simonetti Play Deck, which had been instrumental in helping him start to move around again. And at night, no matter his mood, he recites the same bedtime prayer: “Dear God, thank you for making people, thank you for a great day, and get everyone better at the hospital. Amen!”
In honor of Nathan’s recovery and the strong bond the VanDeVoordes made with the entire staff at Golisano Children’s Hospital, the family organized a party – one that took place months before anyone would’ve expected, given the circumstances. The celebration turned into a fundraiser that brought in nearly $5,000 in gifts and donations for the hospital and the Ronald McDonald House, where Julie had slept with Nathan’s blanket and pajama top. Dave was especially moved that some of the people who work at the Ronald McDonald House are volunteers. “They folded our laundry, provided food and utensils, and a place to stay since there was no way we were leaving the hospital,” he said. “You never think about all those services until you need to use them, then you’re so thankful. We are in debt to the hospital and anything we can do to help, we are willing to do.”
“Nathan is a special little miracle,” said Julie. “He’s destined for big things.”
Nathan is already doing big things, having been chosen to be one of the hospital’s five Miracle Kids for 2012, to represent the 74,000 children Golisano Children’s Hospital treats every year. Tune in to Children's Miracle Network's News 10 NBC Telethon on Sunday, June 3, to meet Nathan and his family, along with four other Miracle Kid families, Golisano Children's Hospital supporters and health care providers. The Telethon is from 10 a.m. to 1 p.m. and 6:30 to 11 p.m. on News 10 NBC. Dial (585) 241-KIDS during the Telethon or donate online to make a gift.
The Telethon is part of a weekend-long celebration called Miracle Weekend, which kicks off Saturday, June 2, with the 16th annual Stroll for Strong Kids fundraising walk and 5K run. The event starts at 8 a.m. at the University of Rochester’s River Campus and wraps up at about 1 p.m. To sign up or learn more, visit https://bitly.com/stroll2012.