Tiffany Vara avoids the term “;brain damage”; because it sounds so permanent.

And five years into the physical and emotional saga that is pediatric acquired brain injury, the Honolulu mother of five knows that how her severely affected daughter is today may not be how she is tomorrow.

“;There's always hope. Brain injury and recovery is not on a deadline or a timeline. Survivors always surprise us,”; said Vara, 40, an advocate for the Pediatric Acquired Brain Injury Act of 2009, which addresses the leading cause of death or disability among children and young adults in the United States.

The concurrent resolution under consideration endorses the National PABI Plan to improve acute and rehabilitative care for brain-injured children nationwide; Vara advises the foundation that spearheaded the plan. Her life story suits such advocacy: She was a health care administrator in the Army (her service included deploying to Somalia in 1993); her husband, Ray Vara, is chief executive of operations for Hawaii Pacific Health, which includes four hospitals; and, most profoundly, their only daughter nearly drowned in the family swimming pool at the age of 2.

The 2004 accident deprived her of oxygen, and Abigail Vara, now 8, has coped since with the broad spectrum of physical and cognitive impairments typical of severe brain injury. Although her mobility remains limited and she cannot speak, her growing intellect (she is reading and solving math problems at home) thrills her family, which includes four older brothers.

Tiffany Vara's Christian faith sustains her, and she shares the family's journey on a blog meant to help other special-needs families. That openness makes Abigail a natural fit for the nationwide system envisioned in the PABI Act, which would share patient data to accelerate medical advances.

QUESTION: The “;PABI Act of 2009”; was introduced in Congress last week. What are its goals?

ANSWER: The primary goal is to address a major problem regarding brain injuries in children, and that's the lack of a comprehensive nationwide plan in the treatment, and therefore the recovery, of these children. Right now it's a patchwork, with the type and quality of care varying widely among states and even within cities, depending on which hospital your child is brought to. We want to ensure best practices nationwide so that every child will receive the best care, with the most current treatment options available, no matter where they are being treated.

Q: How do you accomplish that?

A: One way is by applying the “;open source”; principles to medical research and treatment options. That will help health care professionals collaborate more, and have an easier time doing so, connecting via the Internet to share information about what's working and what's not. ... We want updates on the best treatments and techniques to be easily accessible by health care professionals no matter where they are, as well. We hope that approach also will create opportunities for more research into brain injuries and the development of new treatments ... What we've been finding out is that there is a lot of hope of recovery, even over the long term, which wasn't always thought to be the case. ... Even though brain injuries affect millions of families, the relative investment has been less, in terms of research dollars, than it should be.

Q: What are some of the differences in treating and recovering from a brain injury in a very young child, as opposed to an adult?

A: Obviously, the pediatric brain is very different from an adult brain because it's still growing, it's still developing—it has that plasticity, as they say. And the thought is that if the brain is already still developing during that time, there's a chance of using that plasticity to gain better outcomes. ... Abbie was injured when she was 2, and what they told us at that time was 'the younger the better,' in terms of recovery, but now research is actually showing that's not always the case. ... Certainly with the advances in neuroscience there are things being done that weren't even (being done) five years ago. Not all of it is high tech; some of it is low tech. For instance, now they're icing every child who goes into cardiac arrest.

Q: You've blogged about the difficulty coordinating therapy and other essential treatments after Abbie left the hospital. Have things improved in the five years since?

A: No, you still fall off the cliff after you leave the in-patient setting. Adults and older teenagers go to Rehab Hospital, but the younger ones just go home, or back to school. ... There's no place for in-patient rehab or even aggressive out-patient rehab for young children, once they are released from the hospital. There's still a huge hole in the service net in Hawaii.

Q: Among the general public, there seems to be greater awareness about some of the causes of brain injury—say, drunken driving or shaken baby syndrome—than about the day-to-day reality of living with brain injury. Does the PABI Act address awareness?

A: In general, yes. An awareness campaign is part of it. You never plan to become a brain injury family, and once you are ,you can't learn the information fast enough. I think increased awareness will be a byproduct of that open sharing of medical information. But that's not the key focus. The key focus is on the treatment, recovery and the systems of care—creating a seamless system so that families don't have to try to reinvent the wheel during the hardest moments of their lives, when they are existing in that place between life and death.

Q: Can you expand upon what you mean by that, existing between life and death?

A: When somebody is critically injured, we usually read about the tragic death or we read about the miraculous recovery. What we don't read about, or fully comprehend, is this kind of painful in-between, this suspended animation, where the severely injured exist. ... They survived, but they are not fine. ... Imagine that you're fighting the hardest battle you've ever fought, and there's no end point and there's no map.

Q: You've described the strides Abigail is making, but also the challenges she faces. As a parent, how do you balance the risks of treatment with the possible benefits?

A: I think that is one of the most stressful part of this whole journey—deciding whether to do something that might cause pain or discomfort in the short term, but improve her quality of life in the long term. We pray about everything, for guidance on what to do. And we essentially do a cost-benefit analysis, but we're not thinking about money, we're thinking about 'What is the risk to Abbie versus ... how will it help her?' For example, her arms have been externally rotated for almost five years now, and we haven't done surgery because the risk seemed to outweigh the benefit. ... But Abbie is displaying such a depth of intellect now that she needs to be able to use a higher-level communication device, such as a joystick, that would allow her to express herself more freely. It's like her mind is trapped in this body that won't work for her. ... So now we are planning on having that surgery. She is a blessing in our lives, and we don't want to place limits on her recovery.

On the Net
» www.thebrainproject.org
» www.prayforabby.com
» www.matrissewellness.com