Although Duke University Hospital had committed to commemorating Jesica Santillan's memory with a fund in her name, her mother, Magdalena Santillan, has recently retracted her endorsement of the fund. She has since hired a medical malpractice attorney to investigate exactly what happened to her daughter during the two weeks between a mismatched organ transplant and her death.
Kurt Dixon, Santillan's lawyer, sent a letter to Duke saying Santillan did not want the family's name associated with any fund. The move prompted confusion from Duke officials, who questioned the letter's content in addition to its authorship. They had believed that attorney Frank Cassiano, who had been in communication with Duke, was the family's chief legal representative. However, Cassiano has been released from his duties, according to Mack Mahoney, the Santillan family's spokesperson.
John Burness, senior vice president for public affairs and government relations, said the letter was not on any letterhead and contained misspellings of words such as "attorney." He said Santillan met with President Nan Keohane and discussed the potential fund. "My understanding was that the fund was established with [Magdalena Santillan's] desires in mind," he added.
However, Mahoney said Santillan and Keohane never talked about a fund. Instead, he said, they discussed options such as setting up clinics in Mexico and in Durham or a program similar to Doctors Without Borders, a medical outreach program.
"Then all of a sudden they announced a fund," Mahoney said.
SantillA¡n initially supported the fund because she said it could help the poor. She then withdrew her backing when she learned that the clinics would exclusively serve Hispanic families. Mahoney said that when Santillan learned of the fund's purposes - which did not address health care needs - the fund seemed like a "joke."
One of Duke's longtime missions has been to provide philanthropic services for needy patients, a commitment that is embodied in the Santillan fund, said Jeff Molter, Medical Center spokesperson.
"The Duke University Health System is still firmly committed to doing a fund to honor Jesica Santillan," Molter added.
Although Santillan is withdrawing her support from the fund, she is actively investigating Duke's account of the medical proceedings involving her daughter, as recorded in Jesica's medical records.
Jesica, an illegal immigrant from Mexico, came to Duke with her mother for the chance to receive a new heart and lungs. The initial transplant went wrong, however, as doctors placed organs that did not match the teenager's blood type. Although a second set of organs was soon found, the next surgery was unsuccessful, and the teenager died less than two weeks after her first operation.
Mahoney said Duke is not cooperating and that it refuses to release the records the Santillan family wants.
"Duke's not giving the operating records, only the admissions [record]," he said. "[The Santillans] have every right to know [what is in the operating records], no matter how gruesome."
Barbara Woolley, director of health records and information, said a patient or a patient's parents are entitled to a copy of the medical records but not peer reviews, in which doctors judge doctors.
"If [the medical records] had been requested and there had been an authorization, then we would have released them. If the operative record is in the medical record, then we would release that as well," Woolley said, referring to policy procedures.
If the Santillan family cannot get their questions answered and cannot get "substantial" compensation from Duke, they may have no choice but to sue, Mahoney said.
"Duke needs to come forward, sit down and talk, and something substantial - not some little slap on the wrists for Duke - [needs to result]," Mahoney said.
Last month, the Santillan family also hired attorney Howard Nations, who practices in Houston, to continue investigating the matter. In declining comment, Nations indicated that a lawsuit was in the works.
Duke ultimately accepts the blame for Jesica's death and has taken numerous steps to bolster patient safety.
"Duke acknowledged very early on that they were responsibility for the death of the child," Burness said.
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