Salvage Therapy for a Neurologically Devastated Child : Whose Decision Is It ?

At a family gathering, a 22-month-old child fell into the swimming pool. When his absence was noted a few minutes later, his father, an ophthalmologist, pulled him from the pool and initiated resuscitation. The child was admitted to intensive care at the county hospital that receives all drowning victims in the area. The child was comatose, and his parents were told that he would die. Had his parents not remained at his bedside constantly, this prediction might have been fulfilled, as the ventilator malfunctioned each night and staff did not respond promptly to the alarms, according to the child’s father. The attending physician initially declined to implement any of the father’s suggestions, such as steroids, mannitol, neuroprotective agents, or hyperbaric oxygenation, declaring them useless, although mannitol was eventually administered on the advice of an outside expert. Nurses told the parents that the doctors did not want them to have “false hope.” Any positive developments, such as appropriate eye blinks in response to questions, were called a “seizure.” The parents perceived that the staff was attempting to extinguish all hope. Withdrawal of life support was advised, even demanded. The parents learned that hyperbaric oxygenation has been used successfully in near drowning as well as anoxic encephalopathies from other causes. The hospital did not have a hyperbaric chamber, but a nearby clinic specializing in the use of this “off-label” treatment in neurologically injured children offered to provide one. The Director of the Pediatric Intensive Care Unit (ICU) adamantly refused, citing payment issues, a safety risk to the hospital, or a drain on the hospital’s electrical system (the chamber requires only a 9-volt power supply to operate the intercom). Later, concerns about the lack of proof of efficacy and potential adverse effects to the patient were added. The Director warned that the child would not be accepted directly back into the ICU if he were taken to the clinic for treatment (Weiss J, personal communication, 2003). Therefore, the parents took their case to the news media. The local press and television stations issued daily reports on the father’s quest for treatment to save his son. Persuasion having failed, the father petitioned the Broward County Circuit Court, which ordered the hospital to install the chamber, pending approval by the fire marshal, and to permit the child to receive treatment. Ten days after the accident, the chamber was finally ready. One last obstacle was that the ventilator suitable for use in the chamber was not FDA approved for pediatric use. The pediatric intensivists balked. The father insisted on going into the chamber with his son and anAmbu bag. When the treatment was completed an hour later, the child was lying in his father’s arms, breathing on his own. In the father’s opinion, the ventilator might not have been necessary had the child not been continuously sedated. He had been breathing spontaneously since admission. 1