MARQUETTE - The day the Hooper family discovered their 5-year-old son had a relatively rare and potentially devastating disorder started like any other.
Like most rambunctious children his age, 5-year-old Draven Hooper was sent to his room after an outburst.
Usually after such outbursts Draven would stay in his room five or six minutes, long enough to calm down, then come out and apologize, said his father, Tom. But this time, after a half hour to an hour, he still hadn't come out. Draven's mom, Janelle, went in to check on him and found him sleeping.
Draven Hooper, 5, after emergency surgery to stop bleeding in his brain. He has cerebral arteriovenous malformations, defects of the circulatory system in the brain. (Photo courtesy the Hooper family)
"A little bit after that, he woke up and gave out what can be best described as a death cry - my son was yelling at the top of his lungs, saying 'Mom, my head hurts!'" Tom Hooper said.
Draven vomited and was slow to respond when his mother tried to get him to stand up.
"He said 'Mommy, my legs don't work.' And then his eyes rolled into the back of his head," Tom said.
Tom and Janelle Hooper rushed their son to the emergency room at Marquette General Hospital.
This was not Draven's first visit to the emergency room. His parents brought him to the hospital several times previously. Draven was having severe headaches and they seemed to be getting progressively worse. They got so bad that at one point Draven didn't want to go out in the sun. Unable to find a problem, however, hospital staff sent him back home with some Tylenol.
This time, however, Tom could tell there was something seriously wrong with his son. As the family sat in the hospital's waiting area, Draven was non-responsive and couldn't keep his eyes open. He began vomiting again and Tom noticed the areas around his son's eyes, nose and mouth were starting to turn blue.
He told the receptionist what was going on and Draven was rushed to the hospital's trauma unit. A CT scan revealed he had massive bleeding in his brain. At first doctors advised sending Draven to Green Bay, Wis., for specialized surgery, but Dr. Craig Coccia, a neurosurgeon at MGH who was not working when Draven was brought in but was in the hospital on other matters, looked at the scans and insisted the surgery be done in Marquette.
"He took a quick look at (the scan) and said 'No, we have to do it here. Your son is not going to live to make it out of Marquette County,'" Tom Hooper said.
It turned out Draven had cerebral arteriovenous malformations. Cerebral AVMs are defects of the circulatory system in the brain. The cause is unknown. It occurs when arteries in the brain connect directly to nearby veins without having the normal blood vessels - capillaries - between them.
Normally arteries carry oxygen-rich blood away from the heart to the rest of the body and veins return oxygen-depleted blood to the lungs and heart. Arteries usually divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Capillaries then join together to form veins.
The direct connection between the high-pressure arteries and low-pressure veins can be fragile and prone to bleeding. Bleeding from cerebral AVMs can be devastating. It can cause severe and often fatal strokes. It's estimated that 300,000 Americans have AVMs and of those only about 36,000 people suffer severe symptoms like Draven, according to the National Institute of Neurological Disorders and Stroke.
After a successful surgery at MGH Draven was transported to Children's Hospital of Wisconsin in Milwaukee by helicopter. After arranging to have relatives look after their other children, Tom and Janelle traveled down to Milwaukee to be with their son while he recovered from surgery.
Tom said he was most afraid of how the bleeding in Draven's brain would affect his personality. Tom's fears were soon extinguished when he got a phone call from the hospital when he and Janelle had just checked into a local hotel. It was the first time Draven was coherent enough to talk.
"The nurse called and said 'You're son's awake ... he wants daddy,'" Tom said. "I said 'Ask him a question for me ... ask him flat out "How are you doing buddy?"' I was looking for a specific answer and he gave the answer I was looking for. He said 'Awesome.' A lot of time when I ask him that he says 'awesome.'"
Draven spent a week in Milwaukee. While there, a follow-up MRI revealed he would require further treatment. Since Draven requires specialized care, he can't be treated locally. He has traveled to Grand Rapids to see a pediatric neurologist for a follow-up exam and is scheduled to have an angiogram in Milwaukee and possibly more surgery.
Draven is on anti-seizure medicine and doctors have said he could be on it for up to a year. He is very self-conscious about his scar but for the most part he has changed very little, Tom said.
"If he has a hat on and is playing with his brothers, you'd never be able to tell that he had lifesaving brain surgery," he said.
Tom recently graduated from Northern Michigan University's automotive program and works part-time. Janelle stays at home and cares for Draven and his two brothers and sister. A benefit luncheon to help raise money for ongoing hospital and travel expenses will be held from noon to 4 p.m. on June 5 at the Elks Club in Marquette at the corner of Bluff and Front streets. Tickets cost $5 for adults and $2 for children 12 and under.
There will be raffle prizes, a silent auction and 50/50 drawings. The family is looking for gifts for the raffles and help with supplies such as salad, dressing, ham and turkey luncheon meats, meatballs salad greens, bars, containers and buns. For more information contact Draven's grandmother, Cheryl Jones, at 906-396-8426 or his great-grandmother, Carol Huempfner, at 906-226-8176.
"It's a step-by step process ... yeah we're home and he's back to school now, but we're still in the very begining. We've got a long way to go," Tom said.
Christopher Diem can be reached at 906-228-2500, ext. 242.