My Daughter’s Brain Injury Opened My Eyes to Gaps in My Field

May 13, 2021

James Sulzer
Director, Rewire (Rehabilitation with Insight from Robotics and Engineering) Lab
Assistant Professor, Mechanical Engineering

On an otherwise sunny and still day in May 2020 a large tree branch fell and struck our daughter on the head in our backyard. She was just breaking out into an impromptu song and dance, one of her favorite activities. It was a week before B’s fourth birthday and she had just opened an early birthday gift that morning — a toy science lab — that her older brother was playing with after she gave him a turn.

The falling branch knocked her unconscious. B had emergency surgery to remove part of her skull to allow her brain to swell. She was in a coma for two weeks and suffered severe brain damage, but we couldn’t fathom that she wouldn’t make it. 

Before B left the intensive care unit, a nurse said to us that our daughter survived and now it was time for her to recover. We didn’t know the severity of her injuries at the time, and it eventually became apparent that she wasn’t going to simply wake up. We were entirely unprepared for what would become our new lives.

The next four months were spent in hospitals in multiple cities, with the family separated so B could receive the best care. B returned home with severe cognitive and motor impairments and was not fully aware of her surroundings. 

We’re sharing the story of this devastating experience to shine a light on the state of treatment and the importance of useful technology in rehabilitation. We hope this inspires changes to the system of care to emphasize better organization and gathering more clinical evidence and sparks a dialogue in the research community about the best uses of technology.

Nothing about pediatric traumatic brain injury (TBI) is typical since the brain is so complex and every injury is different, and Lindsay and I are not typical parents. We both have PhDs from Northwestern University in biomedicine-related disciplines. I’m a professor in rehabilitation engineering at UT Austin. She’s chief technical officer of TeVido BioDevices and specializes in cell therapies for skin discoloration. Between the two of us, we have a good basic understanding of biotechnology and rehabilitation.

Given our specialties, we were as well equipped as anyone to logically manage such a challenging situation, and yet we were overwhelmed. We adapted to an entirely new lifestyle. We learned to play the roles of nurse, advocate, therapist and administrator all at the same time. B needed around-the-clock care such as feeding and medicines six times a day, turning in bed in the middle of the night, and vigilance due to frequent vomiting. 

B also needed therapy to promote rewiring of damaged neural pathways. Insurance did not provide enough, so we combined home therapy with outpatient services to get a full week of treatment. We supplemented this with 10-15 hours on our own. We had to navigate the labyrinth that is the insurance world, taking eight months to acquire Medicaid so we could get at-home nursing care. We both had to take leave from our jobs not only to care for B, but also our two other small children. It wasn’t that there was no more free time; there wasn’t enough of any time. 

B’s recovery has been a long process. Most days, there are microscopically small gains, but they add up. She has regained the ability to move her right arm with some grasping. She laughs and smiles and loves to spend time with her brothers — she even jokes in her own way. When a caregiver arrives, B lifts both arms in the air and shrieks with excitement. She can roll over on the ground. She can kick her left leg. While we have enjoyed watching this slow recovery, almost one year later we are still struggling to get back some of the child we knew. 

Maintaining hope is critical in the fight for recovery. New treatments, even if experimental, can provide that hope. Parental support groups are replete with anecdotes of children making large gains in recovery with certain treatments. But as scientists, we are trained to look for controlled evidence. The problem with pediatric TBI is that there is little evidence, leaving parents susceptible to dubious claims. The injuries are so varied, the data so hard to obtain, and the differences in ages so important, that clinical trials evaluating these purported treatments are rare. 

Despite our training, we are left without any clear idea of what alternative treatments might work for B. It is critically important that we find a way to get clinical evidence of efficacy because these children desperately require life-enhancing help. We need a team of clinical and scientific experts to provide an unbiased opinion on treatments. Cooperation between clinical centers to collect and share these data is essential.

Using my skills and my network, I have attempted a number of therapies outside the mainstream. We tried electrical stimulation of the nerves, muscle activity biofeedback, simple video games, vibration and other techniques. I also mentored several UT student projects. They built toys, investigated communication systems, and modified a motorized kid’s car so she could drive it with her head. 

Through all this experimentation, a constant theme emerged — technology that isn’t used is useless technology. I have learned through this experience that just because something is high tech doesn’t mean it’s effective. And there’s no reason to believe low-tech solutions can’t make an important impact. In rehabilitation, motivating people to move on their own is more important than seeing them move well with robotic assistance. 

Our efforts are now focused on finding the right tech that is usable, durable and motivating. While high tech gets the headlines, we as engineers need to focus our time and energy to make sure our innovations are useful, even if that means looking more at low-tech solutions. We need to integrate therapeutic technology in our daily lives rather than setting aside time for treatments.

Lastly, engineers must look at the larger scope of the problem. Pairing engineers with families to see the struggle first hand could give them a better understanding of what technology will be helpful. We need to appreciate the innovation of simplicity to make real gains in solving the most complex problems. 

Today, this is our reality: Learning to live with so many uncertainties, not knowing if B will ever walk, talk or live independently. B’s last words she spoke before the accident were, “it’s time to sing.” We hope to see more of that vibrant, tenacious little girl.