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Subject: Jesica's story

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Jesica's Story: One mistake didn't kill her--the organ donor system was
fatally flawed

U.S. News & World Report
Washington
Jul 28, 2003

--------------------------------------------------------------------------------

Authors: Avery Comarow

Volume: 135

Issue: 3

Pagination: 51-54,

ISSN: 00415537

Subject Terms: Teenagers
Deaths
Medical errors
Blood & organ donations

Personal Names: Santillan, Jesica


Abstract:

Teenager Jesica Santillan died as the victim of an elementary and inexcusable
medical mistake: her heart-lung transplant had gone wrong because her blood
type and the donor's did not match. Given the basic flaws in the system
exposed by Jesica's story, it's remarkable that there have not been more
deaths.
Copyright U.S. News and World Report Jul 28, 2003

Full Text:

Last November 18 marked the kickoff of Duke University Medical Center's
first Patient Safety Week. Posters went up. Patients filled in cards, detailing
their medical conditions and medications. The staff was instructed on how
to report safety-related problems. Everyone was upbeat. Duke was taking
concrete steps to deal with the growing national problem of preventable
hospital errors. Less than three months later, 17-year-old Jesica Santillan
was dead, the victim of an elementary and inexcusable medical mistake:
Her heart-lung transplant had gone wrong because her blood type and the
donor's did not match. The tragedy grabbed the national imagination, because
Jesica's parents had been told of miracles performed at Duke and had risked
illegally crossing the Mexican border to bring her to one of the world's
leading transplant centers.

The blame fell most heavily on the surgeon, James Jaggers. He didn't check
Jesica's blood type when he made the request for the heart and lungs he
stitched into her frail body less than 24 hours later. Duke took heat as
well for failing to notice the mishap and save the surgeon from his fatal
error. Jaggers didn't duck responsibility. "As Jesica's surgeon," he said,
his face a study in misery on a videotaped statement released the day of
Jesica's death, "I am ultimately responsible." 

The culture of medicine dictates that the surgeon, as commanding officer
of the operating room, take the fall when a patient is injured or killed.
Jaggers blundered badly, and Duke failed to catch him. "We didn't have
enough checks," Ralph Snyderman, Duke University Medical Center & Health
System's chief executive, says flatly.

Basic flaws. An investigation by U.S. News yields a different conclusion,
one with more far-reaching, and frightening, implications. Jesica Santillan's
death, on February 22, was clearly due to surgeon and hospital error, but
the entire national organ-transplant system also played a major role. The
same process that found Jesica a heart and lungs and moved them to the
operating room failed to protect her. Jesica's tragic death made headlines.
But there have been other cases, many unreported, of accidentally mismatched
organs. Given the basic flaws in the system exposed by Jesica's story,
it's remarkable that there have not been more deaths.

The tale begins with Jesica's birth in Guzman, a small city in western
Mexico, on Dec. 26, 1985. As a child, Yesica (she Americanized her name
when she came to the United States) lacked stamina. As she grew older,
she tired more and more easily. When she was about 5, doctors in Guadalajara
told her mother, Magdalena Santillan, that Jesica would need a heart transplant,
although they did not correctly diagnose the little girl's condition. They
advised her mother to take her daughter to the United States. 

And so she did. In March 1999, Jesica and her mother, along with her stepfather
and a younger sister and brother, crossed the U.S.-Mexican border on foot--without
the help of "coyotes," who charge illegal aliens large sums to smuggle
them into the United States. Their destination was Duke. Magdalena had
heard from a sister, who according to a family friend had also entered
the country illegally and was working in the North Carolina tobacco fields,
about the Children's Miracle Network. Duke was among the affiliation of
170 hospitals committed to providing charity care for sick children. Magdalena's
sister was sure Duke would help Jesica. 

The family's welcome to the United States was anything but warm. They were
accosted and robbed of their savings shortly after they crossed the border.
North Carolina relatives managed to pool enough cash to buy the family
a ride in a pickup truck to Louisburg, a town of 3,500 about half an hour
east of Duke. Louisburg, where Magdalena's sister and other relatives live,
is the seat of Franklin County, which has a Hispanic population of more
than 2,000 out of about 47,000 overall. Buses regularly ferry Mexicans
from the Gulf Coast border to this part of North Carolina. Indeed, the
Carolinas have become such a popular destination that in November 2000,
Mexico established a consulate in Raleigh to serve the influx of Mexican
immigrants. "This is still an agrarian area and jobs are available" in
the fields, says county manager Richard Self. True, adds Joe DeSantis,
former managing editor of the Franklin Times, "the jobs no one else wants."

The family's first contact with Duke came on April 8, 1999. Jesica was
referred to the cardiology department by the Franklin County Health Department
because of her many illness-related absences from school. Her diagnosis:
restrictive cardiomyopathy, a relatively commonplace disease in some Third
World countries but one virtually unknown in the United States. In this
condition, the heart pumps normally but the walls are stiff, so the heart
can't relax between beats to let the chambers fill completely. Blood that
should enter the heart backs up, the flow of blood to the body is inadequate,
and the heart begins to fail. The outlook in children is grim. Doctors
can ease the symptoms with medication, but transplantation is the only
cure if the heart weakens. 

Jesica's heart did just that. On Jan. 11, 2002, she joined a group of about
275 children around the country waiting for a heart transplant. Duke entered
her age, size, blood group, and other medical information into a database
maintained by the United Network for Organ Sharing, a nonprofit organization
in Richmond, Va. Known as UNOS by those in the transplant community, it
administers the national organ network. Jesica was listed as Status 2,
a nonurgent category indicating she was not in the hospital and could still
get around, albeit with difficulty. The most desperate category is Status
1a, Status 1b slightly less so.

The Santillan case, almost immediately, prompted questions--some quite
hostile. What were the ethics of giving scarce organs to a child of illegal
aliens? UNOS fielded about 250 calls, E-mails, and letters, says spokesman
Joel Newman--"people saying they were tearing up their donor cards."

But UNOS policy is clear. Foreign nationals, legal or otherwise, can make
up as many as 5 percent of the recipients of different types of organs
at individual transplant centers, and the organs are distributed under
the same rules that apply to U.S. citizens. (Few centers actually approach
the 5 percent ceiling; last year 3 percent of all 24,892 transplants went
to noncitizens.) UNOS policy defines illegal aliens as resident aliens--the
same as U.S. citizens and foreign citizens granted permanent residency--if
they qualify for state or federal health-related funds, which, thanks to
Medicaid, low-income illegal aliens usually do. But UNOS would find it
difficult to spot those on the waiting list who are in this country illegally
anyway; most hospitals, Duke included, don't ask questions that would distinguish
between legal and illegal aliens. 

Jaggers first met with Jesica on April 5, 2002. Her health had continued
to decline. At this point, even minor exertion often made her faint. On
May 17, she was taken off the heart waiting list and relisted as a heart-lung
candidate. Her chances of getting a transplant seemed slim; just six pediatric
heart-lung transplants were performed in 2002. (Currently 28 children are
on the heart-lung wait list.) But the very next month, on June 23, word
arrived of matching heart and lungs. Jesica was brought into the hospital
and prepped for surgery, only to be disappointed. Jaggers elected to hold
off. "The organs," he says, "were marginal in the first place." 

Screening. Then came the evening of February 6. The chain of events began
at Children's Hospital Boston. Earlier that day, the organs of a 7-year-old
child pronounced brain dead became available. Hospitals do not place organs
themselves. That's the job of 59 regional organ procurement organizations,
or OPOs. They serve as go-betweens, shopping individual organs around until
recipients are found. A hospital with organs to donate contacts its regional
OPO: For Children's Hospital Boston it was the New England Organ Bank,
also in Boston. Medical information describing the donor is entered into
a computer linked to UNOS, and a "match-run list" of wait-listed patients
is generated, screened by geography, medical urgency, blood type, and other
factors.

The OPO starts the search, which spreads outward in concentric rings (map,
Page 58). Organs are offered first to local candidates according to their
medical priority. If no recipient is found--this is a matter of hours--then
the search is extended to greater distances. The New England Organ Bank
was attempting to place the organs, so it was the donor, or host, OPO.
If no local patient is identified by the computer, the host OPO calls the
OPOs serving hospitals whose waiting patients appear on the match-run list.
These then become the transplant, or recipient, OPOs.

It is surprisingly difficult to place a child's heart. "Size is the most
limiting factor," says David Campbell, director of cardiac transplantation
at Children's Hospital, Denver, where he has performed some 180 heart transplants.
A toddler's heart is too small for a 16-year-old; a teenage boy's strapping
heart won't fit into a 5-year-old girl. The New England Organ Bank checked
the match-run list patients in Status 1 or 2--children first, then adults,
although the prospect that a 7-year-old's heart would function in an adult
was dim. With no suitable recipient found, the hunt broadened to transplant
centers up to 500 nautical miles from Boston, a ring UNOS calls Zone A.
(Nautical miles are the measure used for air travel, which is how most
organs are shipped.) Still there were no takers. The ring was extended
to 1,000 nautical miles, Zone B. Durham, N.C., is 530 nautical miles from
Boston.

A match! And so another call was made early that evening to Carolina Donor
Services in Durham, Duke's link to the transplant network. Two Duke patients,
a child and an adult, had appeared on the heart match-run list. A Carolina
Donor Services transplant coordinator communicated the offer to Carmelo
Milano, Duke's adult heart transplant surgeon on call. The child was listed
first, so Milano referred the coordinator to Jaggers, the pediatric transplant
surgeon on call.

Jaggers turned down the heart. His patient, suffering from an illness called
viral cardiomyopathy, was too sick for surgery. But then he had a second
thought: Could another child have the heart and lungs? If so, he'd like
to know the quality of the lungs. The child's name, he said, is Jesica
Santillan. 

Jaggers doesn't remember discussing blood type at all, although the coordinator
has told investigators he specified the donor's blood type to the surgeon.
Jaggers had forgotten, moreover, to bring home a printout of wait-listed
Duke patients that he and other transplant surgeons were supposed to have
with them at all times. "Usually," he says despondently, "I'm aware of
the blood type of patients on my wait list." The donor organs being offered
were type A; Jesica was type O.

It isn't terribly unusual for a suitable candidate not to appear on the
match-run list. "Sometimes someone makes an error typing in the blood group,
or the size," says Shirley Schlessinger, medical director for renal transplantation
at the University of Mississippi Medical Center in Jackson and member of
the UNOS board of directors. UNOS fields an average of 350 requests a day
in its organ center, many of them from OPOs checking information. The query
from Durham would have seemed routine.

The Carolina Donor Services coordinator alerted the New England Organ Bank
that Duke wanted the heart and lungs for a patient not on the match list.
The coordinator, according to New England Organ Bank spokesman Sean Fitzpatrick,
agreed to verify with UNOS that Jesica was properly wait-listed as a heart-lung
recipient. The Boston OPO could not do that itself; donor OPOs have access
to match-run lists but not to wait-listed patients who don't appear on
them; transplant OPOs, on the other hand, can access wait lists for the
hospitals they serve but cannot see match-run lists. The restrictions were
put in place in the 1990s, after UNOS caught some transplant centers manipulating
the lists to favor their patients.

Early on the morning of February 7, the Carolina Donor Services coordinator
called UNOS. All calls into the organ center are recorded. The computer
audio file and a transcript were provided to U.S. News. When the coordinator
posed the question about Jesica, he initially misspelled her last name--and
clearly and incorrectly identified her blood as type A, an obvious warning
flag in retrospect. After some difficulty, the UNOS organ specialist found
her: 

UNOS organ specialist: "Ah, there it is. OK. She's listed as a Status 2,
heart-lung." (He did not check her blood type, and in fact UNOS policy
does not require him to do so.)

Then this exchange occurred:

Coordinator: "So she is on the list then?"

UNOS: "She may not have been showing up on the [match-run] list due to
some . . . "

Coordinator: "She may not have gone far enough down the list?"

UNOS: "Either that or she could be screened off for some--you know, one
of the requirements."

"No close calls." A second warning flag had not registered. A follow-up
question or two might have stopped the transplant from happening. But OPO
coordinators are instructed not to challenge or otherwise involve themselves
in medical decisions. Moreover, when an OPO and a transplant center have
worked together for years without incident, there is less reason for coordinators
to be watchful. That was part of the problem, says transplant surgeon Duane
Davis, who is both Duke's director of heart and lung surgery and medical
director of Carolina Donor Services--a dual role that is commonplace in
transplantation. "CDS had gotten very used to dealing with us," he says.
"There had been no close calls." The coordinator's job was only to verify
that Jesica Santillan was wait-listed for a heart and lungs, and he did.
No UNOS policy or procedure had been violated.

It was time to give Duke the good news, but there was one more hurdle.
At about 2 a.m. the coordinator contacted Davis, the adult heart-lung transplant
surgeon on call, to offer the organs to the adult patient on the match-run
list. Davis declined--they were too small. The next call, about an hour
later, went to Jaggers. The surgeon formally accepted the organs, and the
coordinator called his New England Organ Bank counterpart, who released
them to Duke for Jesica.

At Duke, Jaggers started the wheels turning. The family had to be notified
so Jesica could be brought in. That fell to the pediatric coordinator.
In most transplant centers, the transplant coordinator also double-checks
the patient's medical information against the donor's; the job is as much
clinical as it is logistical. That is true of the 15 registered nurses
who are Duke's transplant coordinators in every other transplant service:
liver, lungs, kidney-pancreas, and adult heart. The coordinator in pediatric
heart and lung transplant was a nurse practitioner, a step above an RN--but
she had not received the same extensive training as the other coordinators.
The transplant surgeons did not expect her to confirm--or even to ask about--the
blood type of donor organs. That was the surgeon's responsibility.

Jaggers also had to arrange for someone to go to Boston to remove the organs
and bring them back. The on-call "harvest" surgeon was also not available,
so Jaggers sent Shu Lin. Lin was not a full-time senior attending physician;
he was a resident. Many transplant hospitals routinely send residents on
recovery missions. It's a matter of resources. Few centers have enough
transplant surgeons, especially if multiple transplants are in progress,
to use one to collect organs. But Lin was board certified in general surgery
and in his 12th year of postgraduate study. He had gone on recovery missions
before. 

About 9 a.m., Lin, accompanied by a Carolina Donor Services representative,
took a charter flight to Boston. He had three pieces of information: Jesica's
name, the fact that she was small--about 5 feet, 2 inches and 80 pounds--and
she was a pediatric patient. He did not know Jesica was type O.

After Lin arrived at the hospital, he and Jaggers talked by phone three
times, never mentioning blood type. They discussed test results and reviewed
the condition of the heart and lungs--prior to removing them and then again
after they were extracted and placed into a large sterile Igloo cooler.
Lin consulted the "donor packet," which includes lab results, the donor's
height and weight, cause of death, and other medical information, such
as blood type. The packet was placed in a clear plastic folder, which was
also labeled with blood type. A Carolina Donor Services tag on the organs
identified the donor's blood as type A. As an added precaution, the Igloo
itself was marked with the donor blood type. No one in the operating room
knew Jesica's blood type. They were not required as a matter of policy
or practice to ask, and they didn't have to check it against the donor
even if they did know.

Lin placed the last call just before leaving the hospital to give Jaggers
an expected arrival time. The clock was ticking. The longer a heart is
out of the body--"ischemic time" in transplant jargon--the lower the chances
that it will revive and function properly. Surgeons prefer no more than
four hours of ischemic time, with an outside limit of eight. The flight
back to Durham was delayed 45 minutes to deice the plane. When the Igloo
was carried into the operating room where Jesica lay, it was nearly 5 p.m.
Almost six hours had elapsed. If anyone in the OR looked at the blood type
marked in multiple places, it didn't register with him or her. 

Jesica was draped and waiting, her chest emptied of her diseased heart
and lungs and ready for new ones. Jaggers got to work.

Jaggers's technical competence was never challenged by Jesica's family
or by any transplant surgeon interviewed for this article. To the contrary,
surgeons who know his work praise his skills. Jaggers has received "overwhelming
support from my colleagues and other medical staff," he says. But inevitably,
following Jesica's death, he would have to prove himself. Duke set up a
formal peer review--an unforgiving, closed-door process in which doctors
judge doctors.

Few benchmarks. Statistics abound in heart surgery, but there are few reliable
benchmarks. The best, arguably, come from New York State, which requires
all hospitals to report heart surgery results. Jaggers's data showed that
in 544 pediatric heart operations he performed at Duke from 2000 to 2002,
the death rate was half the collective rate in New York for the same period.
(Because the statistics were compiled for internal use in the peer review,
the specific death rates cannot be released.)

Nor is Jaggers a transplant novice. In his seven years at Duke, he has
transplanted 13 hearts into children and 24 into adults. He has also done
a total of 10 lung transplants and three pediatric heart-lung transplants,
including the two on Jesica. The raw numbers may seem low, but no one runs
up big totals in pediatric transplantation. Campbell, a veteran at transplanting
children's hearts, has done it 180 times--but it has taken him 23 years.
Jaggers chafes at the suggestion in some accounts that he is a rookie.
His data, he E-mailed U.S. News, demonstrate that "despite what the media
would have us think, I do not appear to be an unqualified, inexperienced
quack."

Nothing seemed amiss as Jaggers finished stitching Jesica's new organs
into place. A blood-type mismatch can provoke a range of responses by the
body. A true "hyperacute" reaction is rare--and horrifying. Many transplant
surgeons have never seen one. The lungs reveal it most dramatically. "It
looks like someone has turned on the water faucet," says Mark Boucek, medical
director of pediatric heart transplantation at Children's in Denver. "The
lungs will start to weep fluid and become purple. It can happen in minutes."
Most rejection reactions are much less worrisome, although technically
they are described as acute. Jesica's fell into that category.

Mismatch. It happened around 10 p.m. As Jesica's chest was being closed,
the hospital's transplant laboratory called to report the mismatch. An
alert technician performing a routine, unrelated test on a tube of the
donor's blood noticed that the blood type did not match Jesica's. He contacted
the pediatric transplant coordinator, who notified one of the surgeons
assisting Jaggers. Antirejection drugs were administered immediately--immunosuppressants
to stop Jesica's immune system from attacking the foreign cells. She was
readied for plasmapheresis, which cleanses the blood of antibodies generated
by the immune system by replacing the clear plasma portion.

Jaggers met with the family. He told them in unadorned fashion what had
happened, accepted the blame, and talked about the outlook for Jesica.
He believes his exact words were that there was "some chance that we will
be able to control the immune system so that these organs might function
and that she might not reject them." 

Mack Mahoney has a different recollection of events. Mahoney is a custom-home
builder in Louisburg. He had read about Jesica in the Franklin Times and
had raised tens of thousands of dollars to pay some of her medical expenses.
He had also become a close friend of the Santillan family and established
a fund for critically ill children called Jesica's Hope Chest (www.4jhc.org).
He says Jaggers told the family--through Mahoney, who is fluent in Spanish--that
Jesica could be kept alive as long as a year while doctors conditioned
her body to accept the organs. (Jaggers denies saying that.) The blood
mismatch and Jesica's true status were not made public. Spokesmen for Duke
say it was at the family's request; Mahoney says Duke wanted to cover up
the matter.

Line-jumping. The issue at stake is whether Jesica might have been able
to get replacement organs quickly if the news had been disclosed immediately.
This implies that match-run lists are not the only way for someone to get
an organ--that a public figure can "jump the queue" and benefit from an
organ that should have been destined for someone else. Suspicions about
jumping are raised whenever a critically ill celebrity--the late Yankee
centerfielder Mickey Mantle or Pennsylvania Gov. Robert Casey, for example--lands
at the top of the list. 

There are ways to increase the chances of getting an organ, but they are
unrelated to media interest. The best one is to get sicker. If there are
several potential heart recipients, doctors for the candidate who is sickest--but
still well enough to tolerate a transplant operation--may be able to argue
their patient to the front of the line. A second approach is to accept
an organ that other surgeons might consider iffy. "When time is running
out, we'll do what we can to place an organ," says UNOS President Russell
Wiesner, a liver specialist at the Mayo Clinic in Rochester, Minn., and
editor of the journal Liver Transplantation. "It might be a little too
big or too small, it may be functionally marginal . . . . Some transplant
teams can take marginal organs and do a good job. Other teams aren't as
seasoned." 

There is one more shortcut. "First, waste no organ," is an unstated UNOS
commandment. "That's the worst thing we can do," says Wiesner. Pressure
weighs heavy on OPOs to place organs quickly. For one, organs in a brain-dead
donor deteriorate. While modern life-support technology can maintain them
for several days, says David Yuh, a heart and lung transplant surgeon at
Johns Hopkins Hospital in Baltimore, after three or four days some function
may be gone. "We like to get them within 24 to 48 hours," he says. Donors'
families can squeeze the timetable. "Many times when you get consent, the
family gives you X hours to place the organs because they want to have
the funeral," says Lloyd Jordan, executive director of Carolina Donor Services.

If time is running out with no takers, desperate OPO coordinators sometimes
skip far down the match-run list or even off it, looking for transplant
centers with reputations for accepting organs at the last minute and turning
them into success stories. " `Aggressive placement' is how we refer to
it," says UNOS Executive Director Walter Graham. Historically, UNOS has
not tallied aggressive placements; it has only required OPOs to file a
special report, to be reviewed later, whenever one was made.

But after the Santillan case, UNOS took a closer look. Shirley Schlessinger,
who chaired an ad hoc UNOS committee investigating blood-related issues,
found that in 2002 there were 256 cases--about 1 percent of all transplants--in
which organs went to individuals who weren't on the original match-run
list. That was not, says UNOS, how Jesica got a second set of organs.

Mahoney went public with the blood-type mix-up on February 14, a week after
the transplant. The story aired on a Raleigh TV station, WRAL. "Magdalena
begged me not to," he says. "She said, `If you go to the news, they won't
take good care of my daughter.' But finally I convinced her." Duke issued
a confirmation on February 17. From that moment on, Jesica belonged to
the nation. Two days later, another heart-lung set became available. It
was not, as Mahoney and others suggested, a "directed donation" from California:
According to that apocryphal story, a 14-year-old girl was on life support
after a pickup truck her mother was driving went off the road into the
California Aqueduct. Her blood type supposedly matched Jesica's, and Duke
was presumably working out the details.

The true story is that her second set of organs came through the usual
conduit, with a call to Carolina Donor Services on February 19 from a midwestern
OPO offering a middle-aged woman's type O heart and lungs to Jesica. She
had come up the normal way on the match-run list. "They were significantly
larger," says Jaggers. "Not ideal--we had to remove part of both lungs.
A touch of emphysema. She'd been a smoker. But the function was very good."
He got the offer late that night. The Santillans were told just after midnight.
Jesica was moved to the operating room at 5:15 a.m. The second round of
surgery began at 6.

Transplant organs are precious. About 50 percent of children who have received
a heart-lung transplant are alive after five years, and only 20 percent
after 10 years. "These poor outcomes," Jaggers says, "beg the question
of whether we should offer this high-risk and expensive procedure to any
patients." Since 1988, moreover, only five children--and five adults--have
received a second heart-lung transplant. Jesica's survival was questionable.
Besides, she had been unable to speak since the third day after surgery;
neurological tests hinted at brain damage. However noble the intent, why
give more organs to a girl who might slip into brain death from the stress
of another major operation?

"Little hints." The trouble was that neurological tests can mean everything--or
nothing. "There's nothing to measure directly, as there is with the heart
and lungs," says Ira Cheifetz, director of the pediatric intensive care
unit--the PICU--that had been Jesica's home for two weeks. EEG readings
of the tiny impulses of the brain are unreliable in the electrical storm
that crackles through a PICU. "And it was made even more difficult with
Jesica," he adds, "because she was sedated and on morphine," both of which
damp down the nervous system. 

The negative findings were small, says Cheifetz, and potentially reversible.
Moreover, Jesica had opened her eyes and could squeeze her hand. "All we
really had," he says, "were CT scans and EEGs, and a few little hints that
she was in there, she was aware." The PICU team voted to go ahead.

Duke's decision was bound to draw criticism. "Some of my colleagues, other
transplant surgeons, have said it was unethical to transplant that girl
again, her chances were so poor," says Robert Robbins, director of adult
heart, lung, and heart-lung transplant at Stanford Hospital and Clinics.
"But that's what I would have done. You can't discount your commitment
to the patient." 

At the family's request, Jaggers was still the lead surgeon. This time,
however, Duane Davis was with him. It was not for lack of trust, says Peter
Smith, who as chief of the division of thoracic and cardiovascular surgery
made the decision. Given the glare of publicity in Jesica's case, he says,
"I did not want Dr. Jaggers to have to be responsible for all decisions
on his own." Davis took on the job of trimming the lungs to fit, removing
a lobe--about a third of the mass--from the right lung and a smaller portion
from the left one. The surgeons moved along at a good clip, finishing up
in just over four hours.

A lock of hair. At 2 the following morning, Cheifetz paged Karen Frush,
chief medical director for children's services, to come to the PICU. Jesica's
brain was herniating--bulging under growing pressure. Frush called Jesica's
parents at the Ronald McDonald House next to the hospital. A CT scan at
3 a.m. indicated significant brain swelling and bleeding. "We told them
it was highly unlikely she could regain brain function," says Frush. At
9 a.m., neurological tests showed no brain activity. There was one more
neurological exam, at 1 p.m. At 1:25 p.m., Jesica was pronounced brain
dead. "You tell [families] the terrible news gently," says Frush. "We said
we were very, very sorry, but Jesica had died." Magdalena refused to accept
the verdict and angrily turned away a question about donation. "You murdered
Jesica," she cried in agony. "Why would we give you organs to murder other
people?"

Finally, the family was left with Jesica to say goodbye. The parents accepted
the PICU's standing offer of a lock of her hair and a plaster handprint.
At 5 p.m., the heart drip was removed. Seven minutes later, her heart stopped.
Jesica's body was moved to a viewing room. Her parents stayed there until
midnight. "That's going farther than we ordinarily do, but because of the
anguish of the situation we wanted to do as much as we could," says Jim
Travis, director of pastoral services. As chair of the university's ethics
committee, Travis has concerns about the second transplant. "We do pretty
well at noting how sick a person has to be for a transplant--we're not
as good at figuring out how sick a person should be to be taken off the
list," he says. "We need to be good stewards of other lives that might
be saved." Karen Frush is proud of her PICU doctors and nurses, their firm
connection to Jesica and commitment to her care under harrowing media scrutiny.
"I've thought about it a lot," she says, "and at the end of the day I'm
at peace."

That cannot not be said of others whose professional and personal lives
were touched by Jesica's ordeal. An error of such magnitude in one of the
world's most prestigious health systems was chilling. It was especially
striking in view of safeguards in place to catch such mistakes. A year
ago, for example, the Joint Commission for Accreditation of Healthcare
Organizations (JCAHO), which visits hospitals once every three years to
evaluate their compliance with hundreds of specific standards, announced
its first-ever standards for patient safety.

Three of the six new standards had relevance to Jesica's case. One mandated
a final check, such as a "timeout," before starting surgery to make sure
the patient, procedure, and surgical site were correct. A second called
for reading back an order delivered over the phone. A third required confirming
with a checklist or other process that all necessary paperwork was at hand.
The six standards took effect on Jan. 1, 2003, little more than a month
before Jesica Santillan's first transplant.

Duke overhauled its transplant protocols almost immediately after Jesica's
first operation. The new system requires a dozen separate checks and double-checks
of blood type and other medical data. Transplant surgeons soon will carry
PDAs that link up with the hospital's computer system, providing full information
on wait-listed patients instantly. At the end of February, Smith's department
began keeping track of close calls--mistakes that don't harm patients but
could--to build in safeguards before problems occur. 

"Money and image." It was all after the fact, of course. And scrutiny of
the new system has been intense. The hospital has been visited three times
by state health investigators on behalf of the Centers for Medicare and
Medicaid Services, which administers federal funding for elderly and low-income
patients and had the authority to decertify Duke as a provider. Hundreds
of millions of dollars in reimbursements--$306,761,662 to be precise--were
in jeopardy. Last week, CMS notified Duke that its proposed corrective
plan seemed acceptable.

Duke lost its full accreditation following an unscheduled JCAHO survey
on March 6. Its status was downgraded to accredited "with requirements
for improvement." A resurvey was performed last month. JCAHO has not yet
sent word indicating whether it is satisfied, but JCAHO President Dennis
O'Leary is impressed with the hospital's response. "There wasn't any resistance
from Duke anywhere along the line," he says. "Duke has gone about changing
their procedures in just the right way." He adds parenthetically: "What
drives academic health centers is money and image. Duke took a pretty hard
hit on image. They got creamed."

The organ-transplant network was severely shaken, too. "Most of the changes
in the last 10 years have been driven not by patient safety but by organ
scarcity," says Shirley Schlessinger. Jesica's death was the result of
"a series of missed opportunities." With the strong endorsement of its
board of directors at last month's annual meeting, UNOS has begun to install
a wide range of multiple safeguards and checks. 

When news of the blood mix-up broke in February, transplant centers around
the country scrambled to verify patient data and bolster their transplant
processes. "It is something I have nightmares about," said Michael Acker,
chief of the heart-transplant program at the Hospital of the University
of Pennsylvania, shortly after Jesica's death. "These are not careless
men. This is an example of what can happen when you let your guard down
and there are holes in the system." The Mayo Clinic's Russell Wiesner adds:
"We found our potential weakness was entering the data, so we now do it
twice." But the surgical profession has a few it-can't-happen-here holdouts.
"We've done 600 and some lung transplants here and we've never had a problem,"
says a thoracic surgeon at a noted midwestern center. "What we have here
is a highly publicized case."

In a final, unhappy twist, Jesica just might have been saved if a particular
investigational drug had been available right after the first transplant.
"It's unclear that blood group was a major contributing factor in the organ
failure," says Duane Davis, a leading expert in transplant rejection. "It
was not a primary player." Three days after the operation, he observes,
Jesica had improved to the point that she was removed from a mechanical
ventilator and was breathing on her own. Then she began to fail. 

A few years ago, Richard Pierson, a thoracic surgeon then at Vanderbilt
University Medical Center in Nashville, ran into a similar blood type mismatch
with a 67-year-old man who received a lung transplant. That mismatch, blamed
on a clerical error, wasn't discovered until after surgery. The experimental
drug TP-10, from Avant Immunotherapeutics in Needham, Mass., may have helped
minimize rejection. But the lungs of Pierson's patient were in much better
shape than Jesica's were after Day 3. By the time Avant President Una Ryan
learned about Jesica on TV and Alistair Wheeler, vice president for medical
affairs, had called Duke to offer Davis several doses of TP-10 under compassionate-use
rules, the opportunity had passed. "We had essentially written off the
organ block," says Davis. "I would have used it if I had been in their
shoes," says Pierson. "But if you've got a sick pair of lungs, the horse
is out of the barn. It's too late."

A bill for Jesica's care would have listed charges totaling exactly $899,382,
according to an accounting done at U.S. News's request. Jesica's family
will never have to pay a dime. Duke has taken care of it. In May, Duke
also announced that it had created a $4 million fund to help underwrite
care for Latino children, with the hospital contributing $1 million over
the next five years and raising the other $3 million elsewhere. 

But unless a generous settlement is negotiated, a lawsuit is only a matter
of time. Lawyers for the Santillan family are readying a complaint that
could be filed in North Carolina Superior Court on short notice. It depends
on the state legislature, which is considering a bill that would cap malpractice
awards for pain and suffering at $250,000. Magdalena Santillan now says
she wants to see Jaggers lose his medical license. But she still keeps
an organ-donor card tucked safely in her purse. 

THE PLAYERS

Five entities in three states were involved in the transplant that went
wrong. Each had a unique role.

Children's Hospital Boston, which found Jesica's first set of organs, is
itself a leading pediatric transplant center and ranks high in "America's
Best Hospitals." 

The New England Organ Bank began the search for a recipient. It is one
of 59 regional organ procurement organizations, or OPOs. 

The Richmond, Va.-based United Network for Organ Sharing, known as UNOS,
is the nexus for organ donation. It maintains the national wait lists--data
describing the thousands of people hoping to become recipients of various
organs.

Carolina Donor Services is the OPO that serves transplant hospitals in
much of North Carolina, including Duke.

William Fulkerson is chief executive officer of Duke University Medical
Center, where, prior to Jesica Santillan, doctors had performed only 18
heart-lung transplants in adults and two in children since 1988. "We've
certainly learned a lot from this," he says.

The Race to Place a Heart

Distance, medical status, waiting time, size, and blood type are among
the factors in matching a heart to a transplant candidate. Minus a few
details, this is how the system should have worked for Jesica Santillan.


[Map is not available.]

1 Children's Hospital Boston calls the New England Organ Bank (NEOB) to
offer organs.

2 NEOB enters the donor's blood type and other information into a database
run by the United Network for Organ Sharing to generate a "match run list"
of candidates based on distance and medical compatibility.

3 Children at local transplant centers are the first prospects. The initial
offer is made to those with the most urgent heart conditions (status 1a),
then to slightly less ill patients (status 1b), and last to those whose
need is serious but not dire (status 2). 

4 If there is no local prospect, NEOB calls centers as far as 500 air miles
away (Zone A) and offers the heart to 1a and 1b patients.

5 If no patient is found, calls go to 1a and 1b patients up to 1,000 air
miles away (Zone B). This is the type of call Duke received.

6 The next offer goes to status 2 patients in Zone A, then to similar patients
in Zone B.

7 The last offer is made to patients in any status in Zone C, beyond 1,000
miles.

[labels]

Zone A 500 miles

Boston - Children's Hospital

Richmond - United Network for Organ Sharing

Heart and lungs sent on Feb. 7

Zone B - 1,000 miles

Durham, N.C. - Duke University Medical Center

Zone C - 1000+ miles

Stephen Rountree--USN&WR

Picture: Jesica Santillan (THE NEWS & OBSERVER); Picture: SECOND CHANCE.
Magdalena Santillan stands vigil at the bedside after Jesica's second heart-lung
transplant. (JESICA'S HOPE CHEST INC. / DPA / LANDOV); Picture: SPOTLIGHT.
The family wanted Jaggers to do Jesica's second transplant, too. (DUKE
UNIVERSITY MEDICAL CENTER); Picture: RESCUE EFFORT. Davis had been optimistic
that the initial rejection could be overcome. (JIM LO SCALZO FOR USN&WR);
Map: The Race To Place A Heart (Stephen Rountree-USN&WR); Picture: NEW
STRATEGY. Smith insisted that Jaggers have surgical assistance when he
performed Jesica's second transplant. (JIM LO SCALZO FOR USN&WR); Picture:
THE OR. This surgical suite was the setting for both of Jesica's heart-lung
transplant operations.; Picture: NEUROLOGICAL CONCERNS. Cheifetz decided
to go ahead despite risk of brain failure. (JIM LO SCALZO FOR USN&WR);
Picture: DIFFICULT. Frush is proud of her staff's attentive commitment
to Jesica, even engulfed by chaos. (JIM LO SCALZO FOR USN&WR); Picture:
COMPASSION. Travis bent the rules, allowing the family to linger with their
dead daughter. (JIM LO SCALZO FOR USN&WR); Picture: POSTMORTEM. Despite
the Jesica Santillan tragedy, Duke remains one of the nation's most highly
regarded hospitals. (JIM LO SCALZO FOR USN&WR); Pictures: no captions (FROM
TOP: MICHAEL DWYER--POLARIS (2); UNOS; CAROLINA DONOR SERVICES; SARA DAVIS--POLARIS)

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