Encephalitis is an acute inflammation (swelling) of the brain. It usually results from one of two ways—a viral infection in the body or an immune response by the body that targets cell tissue in the brain. Though a patient can recover, the after-effects of encephalitis can lead to brain nerve cell damage, resulting in an acquired brain injury (ABI).
Encephalitis is a rare type of infection that has a severe acute stage but can have a lasting long-term effect on patients and their families. For World Encephalitis Day on February 22, Robert Coe, an Associate Director in Biostatistical Consulting Services here at PRA, shares his story about raising Katherine, his daughter who was diagnosed with encephalitis at an early age.
Robert Coe, an Associate Director in Biostatistical Consulting Services here at PRA, shares his story about raising Katherine, his daughter who was diagnosed with encephalitis at an early age.
Katherine’s experience with encephalitis started a week before her first birthday. Out of the blue, she experienced febrile convulsions—a seizure caused by a spike in body temperature. Robert and his wife, Debbie, rushed Katherine to the local hospital where she was immediately transferred to the emergency room.
From there, Katherine was placed in a high-dependency unit and the consultants took the precautionary step of treating her for potential viral meningitis or encephalitis. Two days later, she was transferred by ambulance to Kings College Hospital in London because her condition worsened. A suspected stomach bleed was thought to need specialist paediatric surgery. Katherine was in pediatric intensive care for the next week and a half, where she spent her first birthday.
Thanks to the efforts of her medical team, Katherine’s condition stabilized and the inflammation began to dissipate. However, she had to remain under close medical supervision until the infection was completely cleared. That meant that Robert and Debbie needed to remain in London. Their son Ollie stayed at home, looked after by his grandmother. Temporary housing accommodation provided by the Ronald McDonald Housing project enabled them to closely support Katherine throughout her hospital stay. That was a tough period of uncertainty for the family.
I come from a data management background, so I’m used to dealing with medical words when coding drugs and adverse events, it’s challenging to hear those same words being applied to your daughter.
Robert Coe, Associate Director in Clinical Data Management
Once the acute stage of the illness ended, the true impact of the infection surfaced. Certain parts of Katherine’s brain were damaged irreparably, and Katherine was left with an acquired brain injury. The front left side of her brain had been affected, leaving her with weakness throughout the right side of her body. The areas of her brain responsible for speech, language, and working memory were also significantly affected. Katherine had been crawling at 6 months and toddling at 9 months, but Robert and Debbie had to carry her home from hospital and were told that from that point forward, Katherine would likely require close support from family, health care professionals and educators for the rest of her life.
The prognosis was uncertain, but Robert remembers the words of Katherine’s neurologist, who used the phrase “cautious optimism” as to how much Katherine would recover. The impact of brain injuries is unique to each person and there is no “one rule fits all” in terms of recovery. Robert and Debbie had to plot their journey through recovery with this fact in mind, but they did so with the right attitude. “You just have to keep going and keep going, dig deep and never give up,” he says. “Every new thing she did was a huge achievement.”
Robert and Debbie, have worked hard with Katherine to give her the best opportunities to regain as much function as possible. Working with many physiotherapists, occupational therapists, speech and language therapists, and doctors, she has made a significant recovery and has made progress in many areas.
Katherine has slowly acquired speech using her voice, Makaton and a Voice Output Communication Aid (VOCA) after struggling with verbal dyspraxia. “Imagine being unable to make certain sounds with your mouth. There’s a lot of words you wouldn’t be able to say,” explains Robert. “This is just one example of why we took a building block approach to Katherine’s brain injury—working on what she can do, rather than what she can’t do.”
Robert says that a large part of caring for Katherine requires emotional strength—including preparing yourself for people who don’t understand her disability. “You’re often up against people who only see things at face value,” explains Robert. “Invisible disability is so challenging when you’re on the receiving end of people’s prejudice. There were situations where Katherine’s frustrations would boil over, and people would be looking and thinking why our child ruled our life. Dealing with disability yourself equips you with empathy for and understanding of the needs of others. It changes the family dynamic and takes the challenges of parenthood to a totally different level.”
Robert and Debbie are careful not to dwell on Katherine’s limitations. “She doesn’t know she’s different, but we don’t make a habit of telling her that she’s different,” Robert says. Katherine is surrounded by family, friends and classmates who she can share experiences, memories, and struggles with. She attends a specialist school where difference is normal. Robert considers that her social circle is the most helpful aspect of navigating her life through its challenges and keeping her happy.
“Our whole experience with encephalitis has been life-changing. There’s no other way to put it,” Robert says. Debbie, a qualified teacher, was a data management trainer at Pfizer at the time Katherine fell ill, but she was unable to return to work. After caring for Katherine full time for 17 years, she has only this year returned to full time employment.
We found out the hard way that you end up being your own child’s advocate. You often have to fight tooth-and-nail for everything they need. We’ve had to argue with people, write letters, complain and push to get services and the right level of support for her. We’re grateful we’re in a position to do that. Without people in her corner, Katherine wouldn’t be where she is today.
Robert Coe, Associate Director in Clinical Data Management
While Katherine was never presented clinical research as a care option, the drugs that she was treated with at the time were a very significant contributing factor to her survival. That has left a lasting impression on Robert.
“We talk a lot about what PRA does as a clinical research organization, but when you come face-to-face with that in your personal life, you realize how important your work actually is,” Robert explains. “I worked on the development of two of the drugs Katherine was treated with. Since Katherine’s diagnosis, I see my job at PRA as more than a job. It’s looking after people. It’s giving them hope and a future.”
Robert and Debbie are currently working out some ways Katherine might approach her life after she leaves school. “The plan is for Katherine to go to college, which may be up until age 25,” he says. “After that we need to consider supported living. This is mainly because of her memory challenges but her physical limitations contribute to that need too. We’re trying to find something that will meet her needs, and which requires a provision that's prepared to be adaptable to the individual. We also have to think long-term at something that goes beyond us as parents.”
The COVID-19 pandemic has made that process difficult. With lockdowns in place, it’s impossible to get a sense of different facilities, even with brochures and virtual tours. “You can't get that tangible or gut feel for what places are like,” explains Robert.
There are numerous resources that provide support for patients with brain injuries. “We used a local charity called Find a Voice to access things like resources, books, and information to help with understanding Katherine’s speech challenges,” Robert says. Katherine also used the Portage system, which enabled her to focus on particular areas and move things forward developmentally where she could. Where other aspects of her development were held back for particular reasons, they’d be revisited and tried to bring them forward at a later date. The Encephalitis Society charity has been a significant source of resources and support and Robert, a member, is keen to recognize the contribution the organization has made to raising awareness of encephalitis globally and actively promote research. As a part of this awareness, PRA’s Swansea office will be lit red for World Encephalitis Day on February 22.
Despite the current circumstances surrounding the world, Robert says that Katherine is currently as happy as she could be. “She’s got one of the most infectious personalities I’ve ever met and no-one can be uncheered around her. We’ve always fought for her, and for her character. We’ll keep going to make sure she has the best support we can provide and the best opportunities to express more of that character.”
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