Pediatric nurse Rhonda Bastolla thought something was wrong with son Nico the day he was born, Dec. 12, 2003.
"I can't explain it and I didn't say anything to anybody, but something just stuck in my brain that day," she says.
Little did she know at the time that Nico would undergo a breakthrough surgery when he was 8 months old that would change the course of his life and get a whole company named after him.
When Bastolla and husband Mike brought Nico home from Pittsburgh's Children's Hospital that December, the infant nursed almost around the clock, as though he were starving. "He was never quiet and nothing would soothe him," his mother says.
Doctors suggested colic or other intestinal conditions, but Bastolla couldn't shake the feeling that there was more to it. Soon Nico began showing other unusual behavior. He laughed almost all day, so much so that his father dubbed him Captain Giggles.
When he was 2 months old, Rhonda Bastolla brought the baby to the hospital for a checkup. She got on the elevator with a group of doctors and other medical personnel. As usual, Nico was laughing, which is a behavior not typically seen in children until they are about 4 months old.
Bastolla recalls hearing one doctor say, "'You hear that baby? I wonder what's wrong with him.' And before I could speak, they get off the elevator and the door closed."
Several weeks of tests went by with no real answer except a vague diagnosis of failure to thrive. Nico was still ravenous and continued to laugh up to 18 hours a day. More worried than ever, Bastolla called the hospital and told them, "I'm bringing him in. Not only am I a mother but I'm a nurse. There is something wrong with this kid."
When she arrived at Children's she was adamant, telling a surprised staff, "I'm not leaving. I don't care if you call the police."
Nico was admitted for two more days of tests. That second night, "maybe 30 people walked into the room," Bastolla says.
Someone asked Bastolla to sit down as they began to explain the situation. There was nothing funny about Nico's laughing. He was having a huge amount of fits known as gelastic seizures, characterized by laughing, and they were caused by a brain tumor.
"That's all I heard," she says. "It was like a movie."
Bastolla could hear them speaking, but she wasn't listening anymore. She was sobbing. She called her husband, who remembers feeling "shock."
The mass was near Nico's hypothalamus, a critical structure deep in the brain that regulates everything from body temperature to emotional states. It was benign and non-growing, but the rare tumor would prevent Nico from developing normally.
Termed a hypothalamic hamartoma, the kind of growth Nico had is exceedingly rare. Very little data exist on how common they are but, anecdotally, researchers suggest the chances of having one are about a million to one.
Children with the condition sometimes go into rages and become violent as they get older. Nico was seizing up to 18 hours a day and his brain was being battered.
No matter how much Nico ate, the seizures were burning so many calories that he couldn't get enough food to grow normally. Nico's doctors explained to the Bastollas that the tumor could be removed, but that he would have to wait until he was anywhere from 2 to 4 years old. His brain was just too small for surgeons to operate in the delicate area just above the brain stem.
Such a timeline wasn't going to work for the couple. Mike Bastolla hit the Internet and found a support group that led him to the Barrow Neurological Institute in Phoenix, which had treated cases such as Nico's in older children. Working with Nico's Pittsburgh doctor, the Bastollas got their son's case history presented to Barrow.