Raising a king: a parent's perspective on bilirubin neurotoxicity

This article chronicles the life of James Earl Bostic, known affectionately to his family and friends as "King James." We provide a parental and family perspective on the incredibly challenging journey he faced with his family resulting from unnecessary suffering due to kernicterus, a completely preventable disease. As his mother, I struggled to understand the significant impact of hyperbilirubinemia triggered by glucose-6-phosphate dehydrogenase (G6PD) deficiency, while also raising his sibling and navigating broken systems of care. I became a tireless advocate, pushing his educational team to assume capability and ensure he had access to robust language and literacy skills. I also repeatedly advocated for deep brain stimulation (DBS) to manage his tone, which was only granted after going before an Independent Review Board while he experienced prolonged, life-threatening dystonic crisis. My advocacy proved highly effective. DBS gave him upward and downward eye movement that enabled him to successfully access an eye gaze activated communication device, finally gaining expressive communication. He leveraged that device to validate what those who loved him knew - he had language, emotions, and a very sarcastic sense of humor! King James later addressed medical professionals during the 2019 Kernicterus Symposium at the Pediatric Academic Societies (PAS), describing how hard it was for him without communication and urging everyone to provide a meaningful education to children with special health needs. His story shows the catastrophic impact of bilirubin neurotoxicity while also emphasizing the critical importance of nurturing the whole child, assuming capability, providing equitable access to a high-quality education, and honoring self-direction.