The Jesica Santillan Tragedy: Lessons Learned

Abstract

Seventeen-year-old Jesica Santillan's death as a result of receiving mismatched organs was a tragedy not only for Jesica and her family, but also for her transplant surgeon, James Jaggers, for Duke Medical Center, and for the whole organ transplantation community. (1) Her death exemplified the importance of designing systems that prevent medical error; the moral, legal, and psychosocial perplexities of dealing with medical error; the fragility of trust in health care institutions; and some of the dilemmas involved in organ procurement and allocation. Jesica's Story Jesica, born on 26 December 1985 in a small town near Guadalajara, Mexico, to Melico Huerta and Magdalena Santillan, was a sick child from the moment she came home. She vomited blood on her first night and had severe, frequent headaches and vomiting as a young child. When Jesica was five years old, a Mexican doctor diagnosed her with anemia and prescribed iron pills. When another doctor suggested that she might have a heart murmur, Jesica's parents took her to Victoria, Texas, where an American doctor discovered that she had restrictive cardiomyopathy, a fatal condition in which the left ventricle of the heart does not fill with enough blood to provide the body with adequate oxygen. In March 1999, the Santillans, who do not speak English, decided that they needed to go to the United States to get treatment for Jesica. Magdalena Santillan's sister, who lives in Louisburg, North Carolina, had told the Santillans that Duke Medical Center could help. The Santillans paid 5,000 dollars to a smuggler to move the whole family, including Jesica's brother, Ulises, and sister, Dulce, across the border. (And while they were traveling through the Sonoran desert, thieves stole all of the family's money, including Jesica's earrings.) When they arrived in Louisburg, Melico obtained employment as a construction worker, and Magdelena took a job as a housekeeper for Louisburg College. Jesica's condition continued to worsen. She developed pulmonary hypertension and was short of breath whenever she exerted herself. In the spring of 2000, doctors recommended that she receive a heart-lung transplant, but the family could not afford the $500,000 operation, and they did not qualify for Medicaid, given their status as illegal immigrants. They began raising money for the operation with the help of local churches and civic groups. Mack Mahoney, a Louisburg homebuilder who had read of Jesica's plight in a newspaper and befriended the family, spent tens of thousands of dollars of his own money for her heart surgeries and in August 2000 established a nonprofit foundation, Jesica's Hope Chest, to help raise money to pay Jesica's medical bills. In May 2002, Jesica's doctors at Duke placed Jesica on a waiting list for a heart-lung transplant. On 6 February 2003, the Santillans got a call from a transplant team informing them that they had found organs for Jesica. A donor had become available through the New England Organ Bank, which ran a search on the national registry of potential recipients and found two patients eligible at Duke, Jesica one of them. The Organ Bank contacted Carolina Donor Services, which contacted the on-call adult heart transplant surgeon, who then referred the agency to Jaggers, since the potential recipient was a pediatric patient and Jaggers was the on-call pediatric heart transplant surgeon. Jaggers concluded that the first potential recipient was not ready for surgery and asked about obtaining a heart and lungs for Jesica Santillan, referring to her by name. The agency said that it would check and call back. The agency contacted another on-call adult heart transplant surgeon and offered the organs to him, but that surgeon declined them because their size was not appropriate for his patient. Finally, the agency offered the organs to Jaggers for Jesica, and Jaggers accepted them. Lost in these exchanges was the fact that the donor had type A blood. …