We were exposed to a whole new set of clichés during this experience. Each section has a corresponding cliché that will help you fit in at any rehab clinician cocktail party.
The purpose of this section is to outline some of the challenges we have encountered so far. Since this is written for an engineering audience, we wanted to provide a comprehensive picture of the problem to inspire some solutions. But we also wanted to share the personal challenges that are an integral part of pediatric rehab and should therefore be considered during solution design.
Motor and cognitive functional level
Perhaps the most visible challenges are B’s motor and cognitive impairments. She is fully dependent for all activities of daily living. In some ways it is similar to caring for a newborn, but substantially more complex. Communication is challenging. She can select between two choices (e.g., more/all done, stop/go, different toys), and displays emotions such as happiness, aversion, discomfort and pain. Often, she is upset for unknown reasons, but a soiled diaper, being left alone, bored of a TV program, uncomfortable position, pain, nausea or constipation are most likely reasons.
B does not understand that training will make her better so she needs the proper incentives to participate. She likes family pictures and videos, bubbles, breaking things (e.g. block towers), music, looking in the mirror, attention, and seeing people get hurt (minorly). However, she habituates quickly to these rewards, which need to constantly change (about every 5–10 min). Exercises that she seems to enjoy the first 2–3 times or even more soon elicit little to no active participation. Reduced endurance also likely plays a role.
B developed severe osteoporosis in both distal femurs after 2.5 months post-injury. As a result, we need to manage and be acutely aware of loading on her legs, especially normal loads and twisting loads. She also developed heterotopic ossification in her distal radii, a condition where the bone fuses into the muscle. This likely is preventing her from fully extending her elbows, in addition to the contractures that have developed. Her right plantarflexors likely have contracture and she is undergoing serial casting to slowly stretch the muscle. It also appears that the skull is resorbing from the earlier cranioplasty and will require future plastic surgery.
B has two implants: a VP shunt and a g-tube. The VP shunt carries cerebrospinal fluid from her ventricles to her abdominal cavity to avoid excessive intracranial pressure. Shunts often fail over months and years, and it is difficult to know if a failure has occurred unless symptoms such as vomiting or a change in cognitive state appear; if so, this is an emergency. The g-tube is an implant in her abdomen that provides a port to her stomach for purposes of feeding and medicines. The g-tube can be pulled out fairly easily due to mishandling during transfers, gets clogged, and gets pulled out sometimes by our daughter. It is also an infection risk.
Initially we were adamant that B receive evidence-based treatment, especially given knowledge that the field has been dominated by eminence-based medicine, that is, the opinions of respected clinicians, for years. Unfortunately, there are very few clinical trials in pediatric TBI in comparison to cerebral palsy (CP), stroke, or even adult TBI. We were not made aware of any research studies that we could participate in during our stays in the hospitals. Despite our knowledge of the advances that come from research, we would most likely have declined participation in these studies due to the overwhelming stress of our situation. If it was a late stage clinical trial with more knowledge and likelihood of success, we still would have feared receiving the placebo. While clinicians rely on relatively conservative treatments based on stroke and CP literature, it is certainly possible that for many of these treatments, individuals with pediatric TBI may not follow suit. This leaves us with very little factual information to decide the best course of action and vulnerable to individuals claiming efficacy of their treatments without evidence.
There is also a lack of knowledge of how neuroimaging measures correlate to recovery. Perfusion imaging was used to identify permanently damaged areas of her brain, and I additionally asked for white matter tract imaging during her inpatient stay. However, this request was refused because it would not affect her treatment, and along similar lines it is unclear how information from perfusion imaging played a role in her treatment. Thus, current clinical practice treats the brain as a black box and “she recovers what she recovers”. Ironically, this is usually what I lead my grant proposals with to motivate why we need to better understand how the brain recovers from injury. I was hoping that this experience would provide some new insight in that regard, but instead it has only reinforced the need for more quantitative metrics for tracking impairment and recovery.
Along with the lack of clinical evidence for standard treatments, there are a host of alternative treatments that have scant clinical evidence but need to be explored. Among those that we researched include hippotherapy (i.e. horseback riding), infrared laser therapy, essential oils, stem cells, hyperbaric oxygen therapy (HBOT), and various alternative physical therapy approaches. Some of them, including HBOT and stem cell therapy, have clinical evidence for other indications, but little to no data for TBI and/or in the pediatric population. Stem cell treatment has few practitioners and there are fewer clinical trials that are ongoing. HBOT is popular with parents, but not recommended according to a recent review in CP literature . Many parents of children with TBI and other brain injuries report success with stem cells, HBOT, and other therapies, but there is no control and the potential for a placebo effect. This situation creates a conflict between how we were trained to evaluate evidence as scientists and wanting to provide whatever therapy could potentially help B. For instance, B could be one of the responders to treatment even if the average patient may not benefit. There could also be nuances in these clinical trials that could indicate B would benefit but could not be gleaned from a high-level review and we do not have details of the literature that could help us make a more informed decision. Additionally, the lack of data to support a therapy in this indication does not mean that it is not effective, but it requires research. Speaking with knowledgeable colleagues on the subject is helpful, but there are also conflicting opinions. Moreover, these alternative treatments require considerable time and money and are not covered by insurance.
Aside from an unknown window of neuroplasticity, B’s severely impaired functional state implies a host of training exercises are needed. Vocalization, stretching, swallowing, sitting, standing, walking, grasping, rolling, vision training, decision making, are some examples, and this training occurs at home and in the clinic. When factoring in feeding times (4 per day at about 1.5 h per feed), napping (1 h), and transportation to the clinic (about 20–30 min each way, occasionally multiple trips), there is not enough time in the day to accomplish all the exercises required. We also need to consider her tolerance for all of the training.
Simply put, the caregiver burden is crushing. As parents we need to take on the additional roles of advocate, administrator, nurse, and therapist often simultaneously and requiring both parents, taking attention away from our two other children. Transportation and attendance for her at school, medical appointments including multiple specialties, orthotics, PT, OT and ST is time consuming. Additional tasks including researching alternative therapies, researching and organizing caregiver, medical, educational and nursing plans, navigating labyrinthine Medicaid and Medicaid waivers with little knowledge, refilling prescriptions and unexpected ER visits are many examples of time requirements. We took a leave of absence for an extended period of time from our jobs or were not working. Community and family support are critical, but limited in reducing this time burden. This issue is especially pronounced since we have no family in the area, but we are deeply thankful to have a supportive community locally and friends and family all over the world that have supported us in a multitude of ways. The time strain affects regular exercise, our own medical appointments, housework, sleep, relaxation, careers, and time to spend with our other children and our marriage.
Adjusting to a new lifestyle
After returning home to Austin, we were thrown into a new lifestyle. Up until three months ago B had to be turned in bed every four hours including in the middle of the night. She currently receives about 175 doses of medication a week at six different times of day. We needed to acquire adaptive equipment as soon as possible, despite insurance taking months to supply an adaptive stroller and stander. We were able to get by through a local equipment sharing program (CPath) where we could find a bath chair, wheelchair and stander that were good enough in the short term. Adjusting our lives to the coronavirus pandemic was certainly challenging, and then this adjustment was bewildering. Although we had basic training at the hospital, much of what we learned was from trial and error, which can produce some scary moments with B in such a fragile state. We needed to learn numerous tasks that were new to us, e.g. administering medications, g-tube care, managing her health care schedule, coordinating between insurance and medical providers, etc. Typical activities also became more challenging (e.g. getting dressed, brushing teeth, riding in the car). Fortunately, our house and car didn’t require modifications due to how they were already configured and her small size since she is so young.
Insurance and expenses
There is a substantial cost of care even with insurance. Expenses include splints, outpatient therapy, home therapy, stroller, stander, medicines, and specialist appointments. We provide a co-pay for these items through primary insurance, but even with a co-pay adaptive equipment can be expensive (e.g., our stroller co-pay was $1200, our stander was $800). Our primary insurance does not cover items that we feel are essential such as car seats, bath chairs, and vision therapy. The treatment costs are exacerbated by lost wages as well as additional costs for our other two children. Primary insurance will only cover up to 9 h of outpatient therapy a week, substantially lower than what she needs. We were able to obtain an additional 9 h per week of home therapy through a different benefit category, but we were told this is a rarity, which was surprising given its ability to aid recovery. The desire to provide the very best treatment occasionally clashes with out-of-network options such as intensive outpatient programs. Understanding insurance reimbursement is a very nebulous process, sometimes even to the insurance company employees themselves, which has caused some issues. Receiving public assistance for a disability is complicated and potentially a long wait, making it a difficult process to navigate alone. Eligibility for Medicaid, Supplemental Social Security, and Medicaid Buy-In is dependent on the income of the entire family, which must be below a certain threshold. This income limit is at maximum only about 1.5 times the federal poverty limit, so families with higher incomes could still have detrimental impacts of medical bills, caregivers, and lost wages. Medicaid waivers are available for people with disabilities and only based on the individual’s income, but may have years-long waitlists,Footnote 4 dependent on the state. We recently received Medicaid approval which will help reduce costs and provide caregiver support. We are hopeful that this will ease the burden.
Everyone in the family was traumatized by the accident. Acceptance of such a rare accident radically changing all of our lives remains difficult, but was helped by acknowledging that B as we knew her is gone. Thus, to a large degree, it feels like losing a child. However, this is an ambiguous loss since we don’t know to what extent she will recover, complicating the grieving process. Adding to this trauma is the uncertainty of whether our family will be able to participate in the activities we envisioned, e.g. vacations, hiking, sibling play, or how it will affect career choices, ability to move to a new location, or other life decisions. While initially it was frustrating that clinicians could not offer a prognosis, later we realized that such a prognosis has limited utility because it is only a prediction and will not affect how we treat her. Although we try to remain hopeful, it is very challenging given the slow pace of improvement and general anxiety. The emotional trauma affects our response to additional issues that arise (e.g., violent vomiting, accidental g-tube removal, new surgeries) as well as the care for our other children. Certain stimuli can trigger memories of times prior to the accident: a dress, her favorite foods, another child, annual traditions and events, etc., all causing emotional distress. There is also a strong feeling of helplessness throughout her experience, perhaps exacerbated by the proximity of my professional expertise to her injury. Activities such as searching out advice from colleagues, developing rehab devices, communicating my experience in coursework and writing this article have been therapeutic.
Effects on siblings
As noted above, both of our sons witnessed the accident and the following tumult. While it is unclear how cognizant our younger son was, our older son was quite aware something was terribly wrong. Explaining why he could not see his sister for weeks and the state she was in was more difficult for us than for him, but he still missed his best friend and was not fully aware of how impaired she was. After returning home, our oldest did his best to care for B and spend time with her, seemingly very mature for his age. However, compounded by the social isolation of the pandemic, there were many instances of him and his little brother acting out in situations that would seem unwarranted. He was aware that his sister and little brother both need a great deal of attention, but that still does not mean he accepted not getting enough attention from his parents. He talks to counselors to help him communicate his feelings since this does not come naturally to someone his age. Despite occasional tantrums we are amazed at how well he has fared in this situation. Although separation anxiety is somewhat appropriate for someone our younger son’s age, his difficulty leaving us seemed particularly heightened.
In summary, these challenges represent a large portion of what makes this experience so difficult. What should also be mentioned is the interactive nature of these challenges. For example, reduced sleep and increased stress has caused mistakes with her medications or splinting which have negatively impacted B. We can only speculate as to how difficult these challenges must be to parents of lesser means and/or support structure. It would have been helpful to have a smoother, expedited path to Medicaid and a faster, more transparent decision-making process from our primary insurer. While we received basic care training before discharging from our inpatient stay, a nurse coming to our home to show us best practices on how to take care of her would have eased the transition. We were fortunate to have an experienced OT serve as a coordinator on a pro bono basis that helped us communicate with adaptive equipment, home therapy and insurance. While we used our connections with the scientific community to investigate alternative treatments, we would have appreciated a resource curated by clinical and scientific experts, possibly even an interactive resource, that could help us determine whether a certain treatment might be beneficial in B’s case.