‘Too much brain to contain’

Amy Thompson sits on the front step of her home in Creston, watching her 5-year-old, Bobby Hiatt, and 4-year-old, Brooklynn Hiatt, ride their bikes in the street. They giggle and shriek as they peddle along.

“Bobby, you’re supposed to have your helmet on,” Thompson calls out.

“No, I’m not!” Bobby yells back.

“Yes, you are. You’re not listening,” Thompson said. She smiles. “See? Defiant.”

Bobby grudgingly returns to his mom, who helps him tighten the strap on his helmet.

“He just learned to ride his bike without training wheels last week, so he’s all happy about that,” Thompson said.

Bobby’s giggles, shrieks and high energy Monday evening seemed to negate the truth of what’s happening inside his head.

The first signs

“Last winter, Bobby started having crazy outbursts in the middle of the night, sometimes early in the morning when he’d wake up, where he’d scream and grab his ears and look and point,” Thompson said. “He’d be screaming for 10 or 15 minutes. I couldn’t get him to say anything; he’d just scream and point.”

Bobby first described it as “a lady screaming in his head.” But later on, he described it as a ringing in his head, while simultaneously, it appears everything is moving far away, and it scares him.

“It happened again and again, and he’s always had headaches but I never really thought anything of it except over-exertion while playing,” Thompson said.

These late-night episodes began happening more regularly, and Thompson wasn’t sure what to do but wanted to first rule out physical problems before considering psychological ones.

The diagnosis

“I took him to the doctor, and they drew blood,” Thompson said. “It came out as abnormal white blood cells, so they referred him to a pediatrician to evaluate him and do more blood work, and it came back normal the second time. But with the description, the pediatrician said she believed it was neurological, and she wanted an MRI.”

The MRI revealed the answer. Bobby was diagnosed with Chiari malformation (CM), a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward.

“Part of the cerebellum, the back part of the coordination center of the brain, starts to push down through the foramen magnum, that’s the bony part of the brain, and that’s what causes the problem,” said Dr. Tom Young, a private Creston doctor who specializes in internal medicine. “There’s treatment available, but there’s no real cure.”

There are four types of CM, and Bobby has type I, Thompson said. Type I is the most common form of CM.

“A lot of kids don’t live long with the other types, but this one is so mild, you don’t notice it at birth,” Thompson said. “You don’t see any difference in head circumference or anything like that. But, it’s bad enough that it creates problems – headaches that are frequent and get worse as you age, all kinds of neurological problems, speech problems eventually and coordination problems.”

According to his doctor, Bobby’s brain is protruding 10 millimeters.

“It doesn’t sound like much, but I guess that’s quite a bit,” Thompson said. “So, we think that’s why he’s having all these problems. We went to a neurosurgeon, and they want to do surgery.”

Surgery

Bobby is scheduled to have surgery June 27 in Omaha, Nebraska. He will face a six- to eight-week period of recovery that the neurosurgeon, Dr. Mark Puccioni, said will involve excruciating pain for Bobby.

“The surgery is going to be about four or five hours. They said it’ll take longer with him because his blood vessels are a little harder to find in his brain because he’s young,” Thompson said. “Dr. Puccioni is supposed to be one of the best neurosurgeons in the country, but he said there’s always that risk for bleeding out and passing away. He’s pretty confident, though.”

Amy said the neurosurgeon would like Bobby to be a couple years older, but he does think it is important for Bobby to have surgery now rather than wait until his symptoms are much worse or he decreases developmentally. He has already had one full-blown seizure and has been losing coordination.

“At first, I panicked, and there’s still that part of me that goes, ‘Should I wait?’ But, I don’t want to see a depletion and regret it,” Thompson said. “And, if we wait, he might be in school and would have to miss probably two months and flunk. I want to keep his life as normal as possible.”

Finances

Thompson is a single mother caring for her two children on one income. She works for CHI Health Mercy in LPN clinic nursing and travels to Corning, Lenox and Bedford for work.

She had to go back to college late in life to become an LPN, leaving her with college debt on top of the costs of raising a family. Right now, she can only afford to have her children wear clothes that have been donated to them.

For the surgery, most of Thompson’s family and friends are unable to help out financially, so she is covering costs by herself with help from people in the community who have been donating money and selling T-shirts that say “Team Bobby” on the front and “Too much brain to contain” on the back.

Thompson said the support from the community has been tremendous, especially the Early Childhood Center, local daycares and Crest Baptist Church, where Bobby and Brooklynn are involved in children’s ministry.

“My biggest thing is keeping us good through the summer financially,” Thompson said. “I just want us to stay normal and not have to worry about my electricity being shut off or losing my car or things like that.”

Benefit dinner

A benefit dinner for Bobby will be held from 5:30 to 7 p.m. tonight at Crest Baptist Church, 1211 N. Poplar St., in Creston. Hy-Vee will supply hamburgers and hot dogs, and additional food and drinks will be available for a free-will offering.

Proceeds from the event will go toward medical and personal expenses during Bobby’s upcoming surgery and extended recuperation.

Additionally, if you would like to donate, an account has been set up in Thompson’s name. Write “Bobby’s brain surgery” in the memo line and drop off at or mail to: Nishna Valley Credit Union, 205 E. Taylor St., P.O. Box 44, Creston, IA 50801.

Recovery

Up until June 27, Thompson is trying to involve Bobby in things he loves before he’s laid up for the rest of the summer. They have spent time camping, fishing and bike riding.

“It’s not like he has a tumor or anything that’s crazy, but it’s still going to be a long road,” Thompson said. “They said he should be able to have a full recovery and live a normal life, but each case is different, so we don’t know until after the surgery what kind of life he’s going to have and if he’ll be able to do things like play contact sports. He’s a wild boy. He loves bull riding and car racing shows and football, so Mom always worries about that.”

During his recovery, Bobby will have to lay low to avoid serious repercussions, including the possibility of a stroke, Thompson said.

“The scary part is the surgery itself, and then the recovery time is going to be excruciating,” Thompson said. “Prayers can always be needed.”

She added: “Everybody’s got their journey, and this is ours now. I’m trying to be positive about it, but it is stressful.”