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  • Writer's pictureJohn Lantos

Three really good bioethics books

While giving birth to her second child, Josephine, Dr. Jane Lee has a uterine rupture. It was misdiagnosed. Her baby went without oxygen for a long time and suffered significant brain damage. Her book, Catastrophic Rupture, A Memoir of Healing, describes these events and their aftermath. The subtitle conveys the central message of the book. The book is about a particular form of healing that takes place far from any clinical setting.

Dr. Lee was a pediatric intensivist. She was, in her own retrospective view, dismissive of parents who claimed to be able to tell what their severely disabled children were feeling. She says, “I didn’t believe that this child could have an inner world of her own that she could communicate to her Mom.” It is a feeling that most pediatricians have had. “It is horrifying now to look back on those encounters,” Lee goes on, “I was just disregarding the parents’ expertise.”

The focus of the book is Lee’s profound transformative experience. As a parent, rather than as a doctor, she had to look deep into her own heart and decide how to transform herself into the kind of person who could be a good mother to a daughter with unique and special needs. At first, she approached the problem almost as a doctor would. She methodically sought to be a competent caretaker and case manager. She insured that all of Josephine’s medical needs were met. It took time, though, for her to learn to love Josephine. Of the change, she notes, “I don’t know if it was purely a change in me, or a change in her, or something in both of us. I don’t know whether my growing and developing relationship with her would have been the same if she had not developed the ability to interact.”

Dutch theologian Hans Reinders wrote a book about the ways that we think about disability in liberal societies. In that book The Future of the Disabled in Liberal Society, he suggests that the transformative experience that Lee experienced is common for parents of children with disabilities. “It is almost a universal experience,” he writes, “that the birth of a disabled child throws families into a crisis that generates deep emotional problems.” He characterizes those problems as the struggle parents go through as they try to hold in their minds two attitudes that seem paradoxical or even incompatible. “On the one hand they assert that they would not want to have missed this child – despite all the difficulties that they have been going through. But on the other hand, they express doubt as to whether they would choose to have this kind of life were they confronted with that choice.”

Nobel laureate Kenzaburo Oe, who himself raised a disabled child, wrote a searing and self-critical (fictional) account of a father’s ambivalence about the possibility of raising a disabled child. In the novel, entitled A Personal Matter, the father has the option of letting the child die. He struggles to decide which choice would be right. He is sometimes repulsed by his baby’s deformities and, at other times, is deeply empathic towards the baby. The conflict, it turns out, is not about the sorts of considerations that are the focus of much theoretical bioethics, considerations about what is or is not in the baby’s best interest. Instead, Oe focuses on the father’s internal struggle to decide what sort of person he is. His wife asks him if he is “the type of person who abandons someone weak when that person needs you most.” In the end, the father realizes that he cannot let the baby die and live with himself, knowing that he could have chosen otherwise. Jane Lee seems to have a similar revelation. Both underwent that profound transformation.

Taken together these three books – a memoir by a pediatric intensivist, a theoretical treatise by a theologian, and a semi-autobiographical novel – give insights into the struggles parents go through as they make decisions for critically ill babies, lessons that are important ones for doctors and others who are thinking about how to help families care for children with special health needs.

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