Baby Grace. (Case Study)

At birth, Grace Johnson had a lower than normal heart rate, was making no effort to breathe, and exhibited no movement of her extremities. She was quickly intubated and supported by a mechanical ventilator. Diagnostic testing revealed that she had experienced a hemorrhage high in the cervical spinal cord. Over the next week, the Johnsons' neonatologist consulted the literature and searched internationally for experts with experience in treating the type of spinal cord injury suffered by Baby Grace. According to a physician who had dealt with approximately twenty such birth injuries, decisions had been made to terminate or not to institute ventilator support at the time of or soon after birth in about 50 percent of cases. Approximately 25 percent of the babies that were ventilator supported died before one year of age. The prognosis for breathing without a ventilator and for moving extremities would probably be apparent by about six weeks after birth. Mr. and Mrs. Johnson were clear from the outset that they believed a life of total paralysis and ventilator dependence was not in Grace's best interest. However, they wished to wait and give Grace a chance to demonstrate her potential for recovery before deciding to withdraw ventilator support. The team agreed that the choice should rest with the parents and that withdrawing ventilator support was ethically permissible. Over the next eleven weeks, Grace's mother was at her bedside for most of every day, and her father visited every evening and on weekends. They held and nurtured Grace and participated in her routine baby care but declined to learn suctioning or ventilator management because they were determined that she would not live her life on a ventilator. There were glimmers of hope--occasional movement of one side of the diaphragm, some random movements of the extremities. She responded to her environment and caregivers with facial expressions, and there were no indications that she would experience significant cognitive impairment. But attempts to wean the ventilator support were unsuccessful, and it became clear that there was little if any recovery in the spinal cord. Grace's parents consulted the same experts contacted by the neonatologist, requested a second opinion about her prognosis, and did lots of research. They sought input from family members and spoke with two priests. They contacted the National Spinal Cord Association and received information from hospital staff about services and financial assistance available both short and long term. They felt the outlook was grim for Grace's quality of life despite the best that technology had to offer. They could cite statistics about the impact of such serious medical conditions on marriages, careers, and any future children. They spoke eloquently of a child who would be unable to play sports, couldn't draw pictures for the refrigerator door, would live in fear of the ventilator becoming disconnected, would experience many hospitalizations, could die from any routine respiratory virus, and would know what she was missing because she had normal cognitive function. At three months, the parents requested discontinuation of the ventilator, knowing this would result almost immediately in Grace's death. The family decided against adoption because their concern was not her impact on them, but her own best interest. While they had some staunch advocates within the health care team, the neonatologist and some others felt strongly that withdrawal of support was no longer an option. Grace's medical condition was stable, and she had become a person to them. They suggested that in a few years she might be a candidate for a diaphragmatic pacemaker and might then be ventilator dependent only when sleeping. With braces and a standing table, she might one day stand, and with computers she could operate a wheelchair and other equipment. Everyone knew of someone as impaired as Grace who seemed to have led a fairly complete and happy life and had even managed to excel in something. …