There are certain stories that make me ache. Stories, usually, about a person’s suffering, and their ability to accept, endure, or overcome their pain. Sometimes my whole body will flush and I’ll cry. It’s not necessarily sadness, but the entire spectrum of emotions visiting me at once. A good story of this kind hits me like a lightning bolt of human experience. Hence the ache afterwards.
Claire Schoen’s ‘Heart to Heart’ has such an effect. In a series of three 1-hour documentaries, Schoen introduces us to some of the difficult questions associated with death and end-of-life care. Part II, Children Sometimes Die, probes a topic that is so charged with pain that it is almost taboo to broach. But Schoen reminds us that even though we might not want to think about it, “sometimes children do die,” and discusses what we as a society can do to “help them on their journey.” Schoen’s careful balance between storytelling and reflection imparts this piece with both emotional and intellectual resonance.
The hour centers on Brittany, a 13 year-old girl who is living with cystic fibrosis, and Lamante, a 5 year-old boy with severe cerebral palsy and obstructive airway disease. Both are raised by their adoptive mother Dawn and both “live in the shadow of death.” Brittany is facing a decision about whether to get a lung transplant, and Lamante is having such difficulty breathing that his caregivers aren’t sure that the benefits of continued treatment outweigh the distress of his everyday life.
The story of Brittany and Lamante is interwoven with the institutional perspective of pediatric palliative care: doctors, child life specialists, and healthcare administrators from around the United States describe the challenges associated with their work. The alternation between one family’s story and the reflection about the institutional context within which their story takes place is part of what makes this such a potent documentary piece.
Achieving a seamless connection between specific instance and general significance can be one of the most difficult tasks in writing a radio script. In this piece, the movement between storytelling and reflection (showing and telling) occurs in 5 minute chapters. First we receive the sensory and emotional account of Brittany and Lamante, then this is balanced by the intellectual and analytical narrative of the healthcare professionals.
There is a synergy at work between the showing and telling in this story. Without the story of Brittany’s panic attacks, or Lamante’s charming smile, the larger perspective of pediatric palliative care would not have much emotional relevance. In turn, the doctor who explains that children often do not have the words to express their fear about dying lends Brittany and Lamante’s story another layer of depth.
Brittany does not let her disease define her, and she doesn’t let it prevent her from dreaming about her future. Her situation is heartbreaking and her cheerful resilience is incredible. That she should look so closely at mortality at such a young age seems unfair. But then the doctors who care for dying children on a daily basis remind us that though it is rare, a child dying is a part of life. Stories like this help us learn to confront such wrenching possibilities in a new way.
Children Sometimes Die [1 hr]
Claire Schoen, Part II of III in ‘Heart to Heart’
Produced for Public Radio International, 2003