Book Club Channel
The Angel Effect: Read an Excerpt
The twins were born prematurely, and this further complicated James' condition. At his birth, James cried briefly, the only noise I ever heard him make. He was literally rushed from the delivery room, each was. The two boys were then immediately placed in separate incubators. I was unable to photograph them together. Shortly after their birth, James was then whisked away to the Critical Care Unit at the Hospital for Sick Children, in Toronto. Sebastian remained across the street, in the Intensive Care Unit of Mount Sinai Hospital. Marina was also hospitalized for several days.
After James was born he developed some symptoms of respiratory distress, and later was treated for necrotizing entercolitis. He stabilized 24 hours after birth and was maintained on mechanical ventilation and other support, in the words of his critical care physician, written with clipped detachment on his chart, "while his parents worked through their concern regarding James' long term prognosis."
We were presented with two horrible options: one was to have open heart surgery on a premature baby with a serious risk of brain damage, to be followed by two more open heart surgeries before the age of three. These would attempt to construct a heart that could sustain James through his childhood. Needless to say there was a high risk of death at every turn. Sudden death between surgeries was also a possibility. Then, by about age 20, James would require a heart transplant, as his surgically-constructed heart would begin to give out. This was the upside option.
The other choice was to simply remove life support, and allow James to die as children with this condition had always done before the heroic measures of modern medicine.
Despite the vast experience of the specialists at the hospital, their policy was to offer no advice whatsoever. In hospital jargon it's called "Patient Autonomy". Their policy was to leave the decision entirely to the parents, whether they were equipped to make it or not. It was a cop out really, possibly designed to protect the hospital's interests ahead of our own. It is presented as a patient right, the right to make decisions about medical care without health care providers influencing the decision. They are only allowed to "educate" patients, or in our case the parents of an infant patient, in an either-or sort of way. There is a great deal of debate among medical ethicists and practitioners as to whether this is the correct approach, especially since some studies show that "many patients do not have a strong preference for autonomy … and many even prefer a paternalistic model."
The hospital record written by the critical care physician put it much more starkly than it seemed at the time, with a young life hanging in the balance: "I and others met with them several times over this period to give them information regarding the options for palliative surgery. The increased potential for an adverse neurologic outcome in general and specific to James' prematurity were discussed at length." In fact, we were presented with a monstrous situation that no parent should ever have to face, and decisions that no parent should ever have to make, especially as it concerned a life just born, and so full of promise.
It was an agonizing trial. With Marina still hospitalized, and Sebastian in the ICU, I crossed University Avenue countless times each day going from one hospital to the other. We had the joy of one healthy, if premature, baby to celebrate, and we also had a slow motion emergency unfolding across the street. I spent hours sitting with James. He was constantly monitored. I rubbed his feet. He briefly opened his eyes during the first couple of days of his life. I spoke to him. I told him that his daddy was there, and that I loved him. I felt every minute was precious. His nurse, a wonderful, heroic young woman, gave me a card from James, with tiny handprints, for Father's Day.