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TBI crisis: As evidence mounts of effects of brain injuries on children, financing lags and Congress considers a bill

Traumatic brain injuries last decades, and financing lags as congress considers a bill

Published: Wednesday, July 1 2015 1:26 a.m. MDT

Patrick Donohue holds Sarah Jane, who suffered broken bones and brain damage at 5 days old. (Daniel Shapiro, Daniel Shapiro) Patrick Donohue holds Sarah Jane, who suffered broken bones and brain damage at 5 days old. (Daniel Shapiro, Daniel Shapiro)

Patrick Donohue has been doing the math, but he can't get it to add up: Brain injury is the biggest cause of death and disabilities for kids and young adults by a large margin, sending more than 765,000 young Americans to the emergency room every year. So why, he wonders, does funding for it lag so far behind most everything?

Other numbers puzzle him, too. Like this one: Why can 10 trips to 10 doctors yield 10 different treatment plans if so many kids — and adults, too — have brain injuries? He describes treatment as frequently "arbitrary and random."

Donohue has become an expert on traumatic brain injury, something he never knew much about until the baby nurse he and his wife hired to help when his daughter Sarah Jane was born instead shook her when she was 5 days old, resulting in four broken ribs, two broken collarbones and severe brain damage.

Six years later, Donohue figures his job "is to change the world for her. She walks with assistance. She can't do any of those functions by herself." So he uses the experience from what seems like a former life as a political consultant to raise money for the Sarah Jane Foundation he founded on behalf of her and others with brain injuries. And he teaches communities about traumatic brain injuries, including a subset called pediatric-acquired brain injury, or PABI.

Right now, he says, $4 billion a year is spent on research for HIV/AIDS, which afflicts 56,000 people each year. Autism has 24,000 new cases a year, and is finally getting close to having $1 billion for research, "long overdue," he notes. Of those who enter emergency rooms for brain injuries, 80,000 are hospitalized and 11,000 die each year. But less than $10 million total is spent on figuring out brain injuries.

As for that lack of a care standard, he notes that leukemia doctors have a standard of care that's consistent. "The level of arbitrariness in the system with TBI (traumatic brain injury) is staggering," he says. "You present the case to top doctors and a dozen different procedures will be done." No one has collected the data. Three years ago, he brought experts together to try to knit together a seamless plan for care that would be accessible to all American families.

That's another bit of math: 50 states need 50 master plans, since states tend to have their own primary source of brain injuries. Utah, he notes, has more skiing accidents than some states and fewer of some other causes, which can include concussion, child abuse, strokes, brain tumors, meningitis, drownings and piercing wounds. Doctors need to be able to treat all kinds of brain injuries, but they should be especially up-to-date on the most common causes of brain injuries they're likely to see, he says.

A national plan

A concurrent resolution before Congress, the PABI Plan Act, would recognize brain injury and endorse a master treatment plan. It would create a network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, each to focus on their own state's demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. Donohue says he'll be surprised if HR 2600 doesn't pass by summer. It has bipartisan support — "some of them old adversaries" — and more than 100 cosponsors now.

The plan creates an evidence-based system of care accessible for all children and young adults regardless of where they live in America. It offers seven categories of care, starting with prevention — if everyone got that one right, the others wouldn't be needed. Then it provides steps through accessing care, care itself and reintegration into schools, communities and homes, since there is no cure for brain injury.

The silent injury

Many of those who are injured don't even know it. That's the "most critical aspect about concussions in sports," Dr. Ricardo Komotar, a noted brain specialist at the University of Miami Hospital, told the Deseret News. "It's important to understand that only 15 to 20 percent of all concussions involve loss of consciousness. The other 80 percent are largely unrecognized."

That has long-term consequences, he says, including cumulative brain damage. "You can present with early Alzheimer's, Parkinson's, dementia. We're seeing it more and more, the hits in sports more violent."

Brain injuries are unpredictable. Just ask Jay Francis.

The executive vice president of the Larry H. Miller Group in Salt Lake City remembers putting his ladder across the top of the mobile home so he could wash it. He doesn't remember the fall. The skull fractures and massive concussion are documented facts. The ride to a hospital near his South Jordan home, then to a trauma center in Salt Lake City are vague flashes.

But after a brief stay at the trauma center 13 years ago, he used all of his marketing skills to convince his care team, "I feel great, wonderful. I want to go home."

He got so sick he had to be readmitted and stayed four days. He's been sternly warned to be careful, that another blow to the head could be very dangerous. Other than that, he thinks the only long-term damage he suffered was hearing loss and ringing in his right ear. "I've been fortunate," says Francis, now 58.

Danger at play

Others, especially long-time athletes and children who were severely injured like Sarah Jane Donohue, don't do as well. Only time heals a brain injury — and only time tells whether there are permanent effects.

That's a concern getting lots of attention because traumatic brain injury is an all-star on the sports scene. Recent news stories include Pittsburgh Penguins star Sidney Crosby, 24, sidelined by lingering symptoms after he was concussed more than a year ago. Or Brian Rolston of the New York Islanders, who didn't know he was hurt until he couldn't answer a basic question. USA Today reports 71 hockey players have missed ice time because of concussions this season. Chicago Bear Brian Urlacher was hurt in the NFL, where head injuries are also common.

Even scarier is what the future may hold, experts agree. Boxer Leon Spinks is only 58 and has dementia. His noted opponent, Muhammad Ali, has Parkinson's disease, and most believe the many blows he took to the head while boxing contributed.

Health experts say 10 percent of all sports-related injuries lead to concussions — a number approaching 4 million. As Komotar notes, that's an undercount.

For those with pediatric brain injuries, one of the biggest challenges is getting appropriate assistance in the school system, says Donohue. His daughter has one of the most documented brain injuries in the world, but she was still listed on school rolls as multiple disabilities, instead of TBI, he notes. "If they can't get Sarah Jane's right, that tells me what's going on around the country," he says.

The other category of care really lacking, he notes, is the transition for brain-injured children into adulthood. The brain doesn't finish developing until about 25. So the last category includes "more than half your veterans coming back with TBI from Iraq, around age 19." For older patients, brain injuries are more likely to be stroke-related.

No big deal

There's a tendency to disregard injuries classified as mild TBI, Donohue says. "Imagine someone saying you have mild cancer." But here's the problem with calling 80 percent of brain injuries "mild TBI," he says. Johnny, 8, falls out of a tree and has a brain injury. He seems OK. Six or seven years later, he's relying on executive brain functions that he didn't have to when he was 8. And it's not working for him.

Many experts believe that 90 percent of children in juvenile detention have brain injuries. "His behavior started changing after he fell out of a tree. It's literally a public health crisis," says Donohue, who can cite case after case: A battered woman. A young man who is hit with a swing and develops behavior problems. That one took 15 years "with the world beating him up" before a scan showed the injury. By then, he was done. He killed himself, Donohue says.

The measure before Congress also looks at rural and frontier help, to extend knowledge and treatment options to areas where lots of brain injuries occur and fewer medical options exist.

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