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Our Child's TBI: a Rehabilitation Engineer's Personal Experience

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Our Child's TBI: a Rehabilitation Engineer's Personal Experience Sulzer and Karfeld‑Sulzer J NeuroEngineering Rehabil (2021) 18:59 https://doi.org/10.1186/s12984‑021‑00862‑y COMMENTARY Open Access Our child’s TBI: a rehabilitation engineer’s personal experience, technological approach, and lessons learned James Sulzer1* and Lindsay S. Karfeld‑Sulzer2 Abstract I (JS) am currently a faculty member at The University of Texas at Austin in Mechanical Engineering. My primary research focus is rehabilitation engineering. In May 2020, a week before her fourth birthday, our daughter sufered a severe traumatic brain injury in the early days of the coronavirus pandemic. The purpose of this article is to describe the current state of pediatric neurorehabilitation from technologically‑adept parents’ frst‑person perspectives in order to inform and motivate rehabilitation engineering researchers. We describe the medical and personal challenges faced during the aftermath of the accident, the technological approaches to her recovery that my wife (LKS) and I have examined, some of which may be considered beyond standard practice, and the lessons we have absorbed during this period regarding both the state of rehabilitation research and the clinical uptake of rehabilitation tech‑ nologies. We introduce a set of questions for designers to consider as they create and evaluate new technologies for pediatric rehabilitation. Keywords: Pediatric rehabilitation, Traumatic brain injury, Personal experiences, Technology‑aided therapy, Assessment and assistance Introduction of the diferent technologies used in the clinic (“Role of Brief biography and introduction technology in clinical practice” Section), a list of the tech- Presently, I (JS)1 am faculty in Mechanical Engineering nologies we’ve applied beyond the clinic and based on at Te University of Texas at Austin, and my wife (LKS) this experience (“Technologies Explored” Section) in ref- is the Chief Technology Ofcer at TeVido BioDevices. erence to the principles of rehabilitation devices that we My background is in rehabilitation engineering, primar- have developed. Some of the descriptions may be some- ily aimed at recovery after stroke, and my wife special- what jarring to a casual reader, and were indeed alarming izes in regenerative medicine. In this commentary, we to us, but we feel it is important to describe this experi- will describe our experience with our daughter’s recent ence as objectively as possible so it may be of use to the traumatic brain injury (TBI) starting with the facts of the rehabilitation community. For other parents and caregiv- case (“Facts of the case” Section), followed by a descrip- ers, we hope this article provides a helpful perspective on tion of the medical and personal challenges (“Unmet incorporating technology into a therapy regimen. Medical and Personal Challenges” Section), a summary *Correspondence: [email protected] 1 As a note, this commentary is written in the frst person: “I” refers to one 1 Department of Mechanical Engineering, The University of Texas author (JS) whereas “we” refers to both authors (JS and LKS). We switch at Austin, 204 E. Dean Keeton St. ETC 4.146D, Austin, TX 78712, USA between the two pronouns as the situation requires; we realize this is a bit Full list of author information is available at the end of the article unorthodox. © The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/. The Creative Commons Public Domain Dedication waiver (http:// creat iveco mmons. org/ publi cdoma in/ zero/1. 0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Sulzer and Karfeld‑Sulzer J NeuroEngineering Rehabil (2021) 18:59 Page 2 of 12 Facts of the case intensive “boost” for two weeks (15 h/wk with the same In May 2020, our daughter, B,2 nearly aged four years, ST, PT and OTs). We then directly followed her inpa- was struck on the head by a large falling tree branch tient boost with 3 weeks of intensive outpatient therapy while playing in the backyard with her older and younger (20 h/wk with same ST, PT and OTs) at NAPA Center in brothers. She was knocked unconscious and her skull was Austin.3 We were approved for Medicaid waiver disabil- fractured. At time of arrival at the emergency room at ity services over 8 months after the accident and are now Dell Children’s Medical Center (DCMC) in Austin, TX, eligible for home care including nursing and personal B had a blown right pupil, indicating brainstem dysfunc- attendants. tion and the necessity to intervene immediately to avoid Her current level of motor impairment at the time of death. She received a craniectomy, a removal of a portion this article (9 months post-injury) is severe. Unfortu- of the skull, to relieve the pressure on her brain. nately, we lack appropriate quantitative clinical assess- B spent two weeks in a coma in the pediatric intensive ment methods to succinctly describe her level of care unit where she began to develop tone, frst after a function. To informally describe these impairments, she few days in her plantarfexors, and then after two weeks can reach targets with her left leg and right arm when in her biceps. We conducted passive stretching three given sufcient time and within their somewhat limited times a day for about 45 min to try and avoid her develop- ranges. She can produce limited power grasping with her ing contractures, a shortening of the muscle fbers. Once right hand and some wrist supination. She has no ability her intracranial pressure stabilized and she could breathe to hit targets with her left arm/hand and within a small without a ventilator and oxygen assistance, she was then range of motion can hit targets with her right leg. She transferred to physiatry for approximately 6 weeks at can take some self-initiated steps when fully supported. DCMC. B received a cranioplasty to replace her skull, a She can hold her head and trunk up for a short period of gastronomy tube (g-tube) for feeding/medications, and time. She can roll from front to back and back to front a ventriculoperitoneal (VP) shunt to drain cerebrospinal over both shoulders. She has a delayed and inconsistent fuids. She engaged in therapeutic exercise similar to a swallow, so currently receives all food, water, and medi- typical inpatient schedule (3 h total of physical therapy cations through her g-tube. (PT), occupational therapy (OT) and speech therapy (ST) Cognitively, B tracks with her eyes, recognizes famil- daily). After those two months, B was classifed to be in iar faces, laughs at some jokes and even makes some of a murky cognitive area between a wakeful unresponsive her own (nonverbally), enjoys watching kids’ shows, and and minimally conscious state. Once she was medically follows commands within her abilities. She has a limited stable, we transferred her to inpatient care at Kennedy understanding of language. She vocalizes intentionally, Krieger Institute (KKI) in Baltimore, MD for 9 weeks due but cannot say any words. She has cortical vision impair- to their specialization in disorders of consciousness in ment, but the extent of this impairment is currently pediatric TBI [1]. Tere she received at least 3 h of PT, unknown. She remains severely cognitively impaired, OT and ST daily, but also engaged in up to two additional although due to motor and speech impairments as well hours daily of therapeutic recreation. Once her medica- as being so young, it is difcult to assess the degree of her tion regimen was stabilized to promote her best chance consciousness. of recovery at home, she was discharged home to Austin in September, about 4 months after the injury. Unmet medical and personal challenges (“she 4 At home, B began outpatient therapy at DCMC for 7 h/ recovers what she recovers” ) week and simultaneously participated in a home therapy Te purpose of this section is to outline some of the chal- program for 9 h/week (ST, OT, and PT). We hired car- lenges we have encountered so far. Since this is written egivers, mostly speech-language pathology (SLP) gradu- for an engineering audience, we wanted to provide a ate students, to come over on evenings/weekends for comprehensive picture of the problem to inspire some 15 h/week where their main focus was therapeutic rec- solutions. But we also wanted to share the personal reation. We enrolled her in vision therapy once every two weeks. We additionally carried out home exercises at approximately 10–15 h/week. A faculty colleague came once a week for an hour of PT. After 3 months at home, 3 B was treated by a small army of therapists since her injury. I often asked the B’s therapists thought she was making strong gains so she therapists whether they follow any specifc philosophy, e.g. Bobath, NDT, etc. was admitted back into inpatient therapy at DCMC for an No one I spoke to fully ascribed to any school of thought.
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