“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.
Several weeks later, Rhonda Bastolla received a call from the institute about an experimental surgical device. It had never been used on a patient, but Dr. Harold Rekate was ready to try it on her son.
A noted neurosurgeon, Rekate had been excited the moment he first saw the instrument at a small conference. “All of a sudden it looked like, ‘My gosh, this is going to be perfect for certain cases,’” he remembers thinking, “because you have to have a very thin long instrument and this is the only one that I know of.”
Invented by Joe Mark and his team at what is now called the Nico Corp., in honor of its first patient, the instrument was designed to allow surgeons to operate on difficult-to-reach areas of the brain. A slender tube sucks up small portions of a tumor that are chopped off by a blade.
The Nico Myriad, as it is now called, slices hundreds of times a minute in a motion similar to gobbling, sort of like Pac Man. A mechanical foot pedal gives the doctor precision control. It may sound retro, but its simplicity is inspired.
When Nico’s case came to Rekate’s attention, he realized the new device might be the answer. Otherwise, he says, kids such as Nico were “doomed to have seizures and emotional problems their whole lives.”
The beauty of the new surgical tool was its small scale as well as its precision. It would require only a tiny incision and was flexible enough to get to difficult areas in a baby’s brain with less risk of damaging surrounding structures.
That was vital in Nico’s case because the hypothalamus is “a very delicate area, both from a brain and a blood vessel point of view, “Rekate says. “This device allows you to safely just shave off the mass until you get it thinner and thinner.”
It generates no heat, which further reduces risk. Another major benefit is that it allows the surgeon to work quickly, which is especially important in a small child. Generally, the shorter the operation, the shorter the recovery time.
The Bastollas didn’t hesitate about Rekate’s offer “They said this is very new, it’s experimental,” Nico’s mother remembers, “but right away I said we have to do this. We have no other choice. I can’t have this boy having seizures every day all day long for 3 years because he’s not going to have a life.”
In August 2004, the family flew out to Arizona where 8-month-old Nico was prepped for surgery. During the operation Mike Bastolla recalls, “The clock on the wall didn’t seem like it was moving at all.”
Their request to Dr. Rekate was simple: “We want our son back exactly how we gave him to you, minus the tumor.”
Rhonda Bastolla was at peace with their decision, saying, “when they took him from me to go into the OR, he was seizing. “
A little more than 3 hours later, Nico was in the recovery room. “And from the time he woke up, he never seized again,” Bastolla says. “He just looked different. This kid was bubbly. He was just a different kid.”
Nico’s post-op recovery was quick. He was ready to be released from the hospital in three days, although Bastolla insisted he stay a few days longer, just to be sure.
For the next six years, a critical time in a child’s development, Nico was totally free from seizures. Last summer, he began having occasional episodes, which are regulated by medication. No one is sure of their origin, but the tumor has not grown back.
Nico Corp. has now performed more than 1,500 surgeries with the Myriad, according to company executives. About 400 of the cases were pediatric.
Today, Nico loves baseball, street hockey and football and thoroughly enjoys school.
Bastolla says he is a particularly loving child, especially toward special-needs children. Today, when Nico laughs, it’s for real.
Copyright 2011 ABC News Internet Ventures http://abcnews.go.com/Health/babys-laughing-seizures-laughing-matter/story?id=15189095