The little girl with chubby cheeks and dark brown eyes turns fussy when her dad tries to take off her sweatshirt.
Luzdeestrella Flores-Rios is embarrassed to expose her arms, he explains. They're bowed, almost like parentheses or crescent moons, because her body has problems absorbing calcium.
Those arms have been broken three times in her three years of life. And yet, they're the least of her worries. She must sleep every night hooked up to a machine in her parents' bedroom. The tubes protruding from her belly and chest — for dialysis and feeding when she can't hold down food — are a constant reminder that she's different.
She can't run, jump or fall from a swing like most kids. Contact with older siblings is restrained, and the stairs in her own home remain off-limits — all to safeguard against more fractures of her delicate bones.
These are the consequences of a failed January 2007 kidney operation at Memorial Health System, later deemed unnecessary by other doctors. The surgery was conducted without Luzdeestrella's parents being fully aware of the risks and alternatives to the surgery. And without their informed consent given in Spanish, their native language.
The 3-year-old girl's future is clouded by the uncertainty associated with complete kidney failure. But her soaring medical expenses will be covered by a $1 million settlement, finalized last month, from city-owned Memorial and an undisclosed out-of-court settlement paid earlier by the surgeon, Dr. Bruce Blyth, or his insurance carrier.
Memorial has declined to comment on the case, saying the court file speaks for itself. Meanwhile, Blyth's office manager at Rocky Mountain Pediatric Urology of Denver (which has a satellite office in Colorado Springs) said the doctor was not interested in being interviewed.
The settlements, secured in the Luzdeestrella Flores Disability Trust, will earn interest and pay medical bills. The city's legal counsel, Stephen Mullen, says plaintiffs' experts estimated those bills could exceed $5 million during her lifetime. Treating the broken bones and other problems stemming from the kidney operation has already cost $1 million, funded largely by Medicaid, the state and federal medical coverage program for low-income residents.
Her family hopes Luzdeestrella will receive a kidney transplant soon, but she'll likely need another during her life and will require intensive drugs for years.
"The girl has a lot of abnormalities," says her father, Jesus Flores. "Sometimes she's very good and very happy. Sometimes she feels very down and depressed because of her problems. Sometimes her body is swollen. Sometimes she bleeds. Sometimes milk comes out from the stomach tube. It's very stressful. But she's a blessing, because she's our daughter."
It's a steep price in dollars and human agony, being paid because Memorial ignored a policy mandating that patients provide informed consent in writing in their native language prior to medical procedures — after being fully advised of the possible outcomes in a language they understand.
The case underscores the importance of communication with patients about health care, an issue gaining new emphasis nationwide. Patients unable to establish or maintain effective communication are at greater risk of medical error and poor outcomes, according to the Joint Commission, an agency that accredits health care organizations.
As more patients with limited proficiency in English flood the health care system, which is anticipated to happen with the implementation of health care reform, caregivers will be expected more than ever to provide quality language services to many patients whose first language is foreign.
The Flores-Rios family's experience is a testament to why language services are essential.
Lost in translation
Luzdeestrella's parents are originally from Mexico. Jesus Flores, 57, speaks very little English, and Marisela Rios, 31, none. Although Blyth has said in court papers that the parents, with the help of a relative, seemed to understand the need for surgery when it was discussed a month before the procedure, now the couple say if they'd known of the risks involved, they never would have agreed to it.
"Of course not," Flores tells the Independent through an interpreter. "Only a person who knows nothing would allow him to do it."
According to the family's lawsuit, filed a year ago, when the child was born on Nov. 5, 2006 at Memorial, an ultrasound indicated she had an enlarged left kidney.
Three days later, Blyth suspected the kidney posed a problem, the lawsuit says, although the baby was discharged the following day and was doing "very well," according to another physician.
A month later, Blyth examined the baby and told the parents that the kidney should be removed. He scheduled surgery for late January 2007.
In his Jan. 25, 2010 deposition filed with the court, Blyth admits he doesn't speak Spanish and that he spoke to the parents through the little girl's aunt, who was 29 at that time. "Her understanding of English was very good," he testified, referring to the aunt. "The dad's understanding of English was so-so, and the mom did not understand English at all."
Blyth testified that he knew interpreters were available but didn't seek one out, because he felt the aunt understood him. He admitted, though, that he knew neither the aunt's level of education nor her understanding of medical terms.
He told the family the left kidney wasn't working but he didn't offer alternatives to its removal, other than leaving the kidney intact and monitoring it, which according to his testimony, he didn't recommend. He also testified that the blood tests taken in December were normal and didn't indicate a kidney problem.
On the day of surgery, the aunt wasn't there, Blyth testified, and an interpreter wasn't used, because "the father told me he was understanding what I discussed with him."
Flores says he and his wife agreed to the doctor's decision, for one reason: "The doctor is the one who has to say what has to be done. Then I said, 'Well, if this is the most correct thing, I'll follow that.' The doctor said it was a simple surgery. Not risky. The surgery would be in the morning, and by the afternoon she could leave and go home. I trusted the doctor, because they know what they're doing."
The couple signed a consent form in English, Flores says. The child's medical file contains no such form in Spanish, nor does the file note whether the family was provided an interpreter regarding a consent form, according to Claire Riley, a nurse expert from Boulder, one of several expert witnesses the family planned to call at trial.
Further, Riley's statement says, the file didn't say whether the couple was told of the possibility that removing her kidney could cause loss of all kidney function and that, as a consequence, daily dialysis would be required.
Riley also would have testified that while the doctor should obtain informed consent, the hospital is responsible for making sure the consent form is completed properly.
"It is substandard for the hospital to have breached these duties in this case," Riley says in her statement.
Patient communication standards are spelled out in detail by the Chicago-based Joint Commission.
"The standard expects that informed consent covers the range of risks and allows the patient to make an informed choice," says Amy Wilson-Stronks, a Joint Commission language and culture study expert in the Division of Standards and Survey Methods for hospitals. "That is all contingent on the patient understanding what they're being told and having an opportunity to ask questions."
Accreditation is voluntary and is one way that hospitals may qualify for Medicare and Medicaid reimbursement. It is a prerequisite for some insurers and managed care plans, fulfills licensure requirements in many states, and may improve access to and reduce the cost of liability insurance.
Wilson-Stronks says the standard requires hospitals to provide information tailored to the patient's (or guardian's) age, language and ability to understand, including translation services when necessary. But a Commission study of how communications are handled found that hospitals and physicians too often don't use tools available to them.
"What happens is a default is used, an ad hoc interpreter, a patient's family member, or sign language," Wilson-Stronks says. "If patients can't communicate and offer information to their provider or understand the information being given to them, obviously there's a great deal of room for adverse outcome."
Providing language access services is mandated under the Civil Rights Act, which bars hospitals that receive federal reimbursements from discriminating based on national origin, Wilson-Stronks notes.
"It was interpreted by the Supreme Court that language is a proxy for national origin," she says. "In the last year, we're seeing more complaints being investigated due to the [Obama] administration. I think there's a greater appreciation for it. We've really tried to make it necessary for the patients and providers to have interpreters."
In fact, the Joint Commission plans to implement stricter standards early next year, which would put a greater responsibility on hospitals to determine patients' communications needs, including their preferred language for discussing health care.
As it happens, even those pushing the English language as a "unifying" force in the United States don't oppose the idea of patients being fully advised of health care issues in their native tongue.
"We, in general, don't object to the use of foreign languages in health care provision," says Tim Schultz, spokesman for U.S. English, the nation's oldest and, with 1.8 million members, largest citizens action group dedicated to preserving English language in the U.S. "In medical cases, I think it makes sense to inform people in their native language. We don't have a problem with that."
Although Memorial has released its Joint Commission inspection reports in the past, it refused the Independent's request for the most recent report, issued in December 2008 based on a June 2008 inspection. The hospital cited the Colorado Public Records Law's exemption for "quality management functions — confidentiality and immunity."
After the surgery, Luzdeestrella began to swell up because she wasn't urinating. She didn't go home that afternoon. As snow fell the day after the kidney was removed, she was flown to Denver Children's Hospital. There, she went into surgery for dialysis and was later stabilized in ICU, the lawsuit says.
It was a nightmare for her parents.
"Her life was destroyed," Flores says through the interpreter. "It was a mess. We felt our daughter was dying. It was very painful to know my daughter was ending her life."
"It was a long road," Rios adds. "We knew she was very bad."
Arriving in Denver some time after their daughter, the couple found hospital personnel waiting for them to sign a Spanish consent form before they rushed the baby into surgery.
Later, a physician at Children's noted in the file that "reason for nephrectomy [the earlier kidney removal] unclear." The child was discharged March 9 but has returned intermittently for treatment, including surgeries to put a feeding tube in place and for hernias. She also has suffered complications stemming from difficulty absorbing calcium, resulting in two broken forearms, a broken upper arm and a broken leg.
"Luzdeestrella will continue to have significant health care needs for the rest of her life including the possibility of a transplant or multiple transplants and/or dialysis," the lawsuit states.
Since she was transferred to Children's, the child has been in the care of Dr. Douglas Ford, a pediatric nephrologist and professor at the University of Colorado Health Sciences Center.
To hear Ford tell it in the court file, "the removal of Luzdeestrella's kidney on Jan. 26, 2007, was not needed at that time and likely never needed." He says the best alternative would have been monitoring kidney function with ultrasound and blood tests.
The summary of his testimony also notes that "a known and recognized complication of kidney removal is that a patient can end up without any properly functioning kidney as in this case." He also would have testified that his review of the child's medical file and tests prior to surgery showed "normal good kidney function" and that the child "was a healthy baby."
Memorial's failure to obtain a consent form in Spanish runs contrary to normal practice, but that doesn't make the hospital liable, according to an opinion by Bruce Adelson, a former U.S. attorney who's now a consultant in Washington, D.C.
Hired by Memorial as an expert witness, Adelson writes in his report that Memorial's in-house and telephone interpreter programs offer 24-hour interpretation services in 96 languages. In 2005, based on U.S. Census data showing that 12 percent of Colorado Springs' population was Hispanic, and that 4 percent of the Spanish-speaking population had limited English proficiency, Memorial established in-house Spanish interpretation services. In 2006, Memorial began training medical staff to use interpreters, including those available by phone, Adelson says.
Use of interpreters skyrocketed by 51 percent — from 949 encounters to 1,434 — between September 2006 and March 2007, Adelson's report shows. Use of face-to-face interpreters went up by 327 percent during that time, while use of interpreters by phone fell.
When Luzdeestrella was born and before her discharge, Memorial provided her mom with a Spanish interpreter, Adelson notes. The mother also signed a Spanish consent form prior to the birth. That is important, Adelson says, because it shows Memorial didn't shun its responsibility.
But although Memorial's policy warned against using family members as interpreters due to the risk of conveying information inaccurately, a provision consistent with federal civil rights laws, "the better practice would be to provide an in-house or telephonic medical interpreter," Adelson says.
Labeling Memorial's mistake an "act of inadvertence," Adelson concludes the hospital didn't intentionally discriminate and, hence, didn't violate the Civil Rights Act.
Memorial hoped to call Adelson to testify at the trial, which had been set to begin March 22. The hospital also hoped the judge would allow a jury to consider how much of the blame belonged to Dr. Blyth, thereby reducing a damage award if the jury ruled against Memorial.
But 4th Judicial District Judge David Gilbert booted Adelson's comments, agreeing with the parents' attorney, Gary Blum of Denver, that they amounted to legal opinion, not expert testimony. Gilbert also agreed with Blum that the jury should not be allowed to consider Blyth as a responsible party in the lawsuit. Those were two big wins for the parents, but they turned out to be moot.
That's because Memorial offered to settle the case, days before Gilbert's rulings, attorney Mullen says.
"Before we could advise the judge the case had settled," he says, "these rulings came down."
Which means those rulings didn't prompt the settlement. Mullen says although the hospital felt it had a fairly good chance to win the case, it would have been tough for a jury not to sympathize with Luzdeestrella.
"This was a very attractive, precocious little girl who was in very great need of future medical care, and we recognized that her attorney had done a good job putting together a case we had to be serious about," Mullen says.
Memorial, he adds, faced a possible jury verdict that would award "significant damages," including future health care estimated by experts hired by the plaintiffs to cost $5 million to $6 million under a worst-case scenario.
As it was, Memorial's insurance carrier paid the $1 million settlement, except the health system's $25,000 deductible.
From Mullen's perspective, sometimes it's hard to blame anyone when things go wrong.
"From my experience," he says, "there are occasionally unexpected tragic outcomes even with the best of care."
Blyth's medical license is clear of any disciplinary actions. But under a new recently adopted Colorado law, which requires doctors to report claims they've paid and denials of malpractice insurance, Blyth's profile shows he paid a settlement in 2008 through a mediator or arbiter, although it doesn't say how much, to whom or the reason. His profile shows he hasn't been denied malpractice insurance and has had no restrictions, suspensions or revocation of health care facility privileges.
Karen Gerwitz, communications director for the Department of Regulatory Agencies, calls the profile a good consumer resource, because doctors must disclose settlements reached both within and outside Colorado in order to update their licenses. They also must report other states where they've been licensed to practice.
"If someone doesn't disclose," she says, "we can take disciplinary action."
Blyth last renewed his license in June 2009 and still has privileges at Memorial. Memorial spokesman Brian Newsome declines to comment on Blyth's privileges or to say under what circumstances Memorial would discontinue a doctor's privileges.
But while Newsome says Memorial's policies and procedures are reviewed and changed based on "evidence-based medicine," Luzdeestrella's case prompted no changes.
On the list
Luzdeestrella's best shot at a near-normal life is a kidney transplant. According to Jennifer Moe, communications director for Donor Alliance, one of 58 not-for-profit organ recovery organizations federally designated by the U.S. Department of Health & Human Services to facilitate the donation and recovery of organs for people needing transplants, there were 1,998 people on the organ waiting list in Colorado and Wyoming in late April. Of those, 66 percent needed a kidney, but there was only one child. Luzdeestrella, according to her parents, is on the list.
Moe says for those who need kidneys, 23 percent wait for one to two years, and others wait longer.
Children are one group given priority for transplants under a recent change by the Scientific Registry of Transplant Recipients. The registry reported in 2007 that the median wait time for the 1-to-5 age group was 304 days. Once a donor is identified, whether the organ is a good match for a patient is determined using tests for blood type and six antigens that distinguish people immunologically. Luzdeestrella has been on the list about a year; it's unclear why she's waited so long.
If no kidney is available, a child such as Luzdeestrella will require treatment for high blood pressure, anemia and bone disease, as well as growth issues, says Dr. Bryan Becker, president of the National Kidney Foundation, in an e-mail. He adds that if all goes well, the child can live a long time on dialysis.
One side of Jesus and Marisela's bedroom resembles a doctor's office. The dialysis rigging looms over Luzdeestrella's little bed in the corner, which stands beside a chest laden with medicine bottles, disinfectants, bandages and facemasks.
Flores explains that every evening when his daughter is hooked up for the 10-hour dialysis session, the windows are sealed and her parents don surgical masks and gloves to guard against infecting the area where the machine's tubes are hooked to Luzdeestrella's abdominal tube. The child spent 15 days in the hospital at one point for a bacterial invasion of her blood.
Jesus, who has worked paving streets, and Marisela, who cleans houses, have become disciplined caregivers.
"We're the doctors. We're the nurses. We're everything for her," he says.
They also keep meticulous records. Flores points to charts, mailed to Children's Hospital monthly for a doctor's review, on which they daily document Luzdeestrella's weight, dialysis intake and output, and blood pressure.
Following a transplant, Becker says, patients must take immunosuppressive drugs, medications for blood pressure and cholesterol problems, and aspirin, as well as calcium and vitamin D to stave off bone complications. For up to a year, patients also take medicines to guard against urinary-tract and other infections, and to control blood sugar.
And most kids who receive a kidney transplant, Becker notes, need another one in their lifetimes.
Although all major insurers support transplantation, surprisingly, the primary payer for kidney transplants in this country is Medicare, the nation's health care plan for seniors, Becker says.
Troy Zimmerman, the Kidney Foundation's public policy director, explains that because private insurance wouldn't pay the high cost of dialysis and transplants, "people were dying." That problem triggered a special Medicare designation for those with chronic kidney failure. The foundation reports that every year, thousands of kidney patients receive Medicare-covered transplants, which include coverage of immunosuppressive drugs with no time limit for seniors or disabled beneficiaries, but a 36-month limit for younger patients who are not labeled disabled.
After that three-year period, many patients have faced the formidable task of finding an insurer in a market where pre-existing condition clauses don't cover immunosuppressive drugs. Under health care reform, however, insurance companies can't deny coverage for pre-existing conditions — in children starting this September and in adults starting in 2014.
Luzdeestrella doesn't qualify for the Medicare program, but Medicaid will pay for a transplant.
Zimmerman says Medicaid generally covers care that is "medically necessary" and not "investigational in nature" for those who qualify for the program.
Blum, the family's attorney, notes that Luzdeestrella's "special needs trust," controlled by a professional trustee and by the court, can only be used for certain designated purposes. "In this way the child remains fully eligible for all covered Medicaid benefits including a transplant," he says. "Any necessary expenses not covered can be paid through the trust if the trustee and Court agree."
This is her life
When I first met Marisela Rios and Luzdeestrella, I was a complete stranger, yet they welcomed me into their home.
"Sit," Marisela said, gesturing to the sofa.
During a later meeting, the family sat patiently through a long interview, revealing through an interpreter their deepest feelings about a distressing experience most people only read about.
The little girl's parents don't smile much, and Marisela yields most of the conversation to her husband as Luzdeestrella cuddles in her arms, napping after a short time spent coloring pictures of Sleeping Beauty and Snow White.
The couple met in Mexico, he tells me, each having put a failed marriage behind them. They're soulmates, he says, and have been together 14 years, the past five in Colorado Springs. They live in a modest, comfortable house southeast of downtown, with simple furnishings and a portrait of his father on the wall. Before Luzdeestrella's trust bought the house in December, the family lived a short distance away in a rundown two-room duplex that wasn't conducive to the child's care.
The demands of Luzdeestrella's condition have jolted the couple into a daily challenge that includes simply making ends meet. That may sound strange, but because the settlement payments are designated for Luzdeestrella's care, the couple struggles to get by, selling tamales on the street, cleaning houses and at times visiting a food bank. Flores occasionally goes to El Paso, Texas, or Mexico to sell boomboxes and other goods. He says his child's needs prevent him from keeping a regular work schedule.
"Our life turned 180 degrees," Flores says. "I used to have a very good job before my daughter was born, working in paving. Now our financial problems are all the time. Our big concern now is about our daughter."
During my visit, the mailman delivers a box that Jesus says is full of donated clothing from relatives in New Mexico.
Unlike a previous visit when Luzdeestrella was smiling and eager to make friends, on this afternoon, she's lethargic and resists efforts to coax a smile from her.
Their older daughters, ages 11 and 13, and a 16-year-old son Marisela has from her previous marriage don't play with their little sister. They're forbidden because of the danger involved.
"We take her to the park, to McDonald's," Marisela says. "But she doesn't have fun because we won't allow her to go to the playground equipment, because we're afraid she can have a fracture. Sometimes we push her in swings, but we are very careful about that."
Flores says they've pondered why this would happen to them. They gave their daughter to a doctor in good condition, and he returned her connected to a machine, he says.
Asked how he feels toward the doctor, Flores is overcome with emotion, wiping away tears.
"We believe in God, and that belief makes you understand he's just a human being," he says. "He also saves lives, but he made a mistake with our daughter. But we forgive him."
For now, the couple is focused on hoping for a kidney donor. Denver Children's is optimistic, they say, and the hospital recently instructed Flores not to leave town. When a kidney becomes available, the child must be ready immediately.
Although Luzdeestrella's parents are thankful Memorial and the doctor agreed to settlements that will pay for their daughter's care, all the money in the world wouldn't compensate for what they've already been through and will face tomorrow, next week and next year.
"I would return the million dollars for her health," her father says. "I have to thank God first that we still have our daughter alive. Regardless of her condition, she's alive."
Memorial Health System's insurer has paid out millions of dollars in settlements during the past five years in cases arising from care issues.
The hospital's insurance policy limit is $1.75 million per incident and $5 million per year. So far this year, the hospital has paid out $1.04 million. If the policy limits are exceeded, Memorial has supplemental coverage that would kick in to cover an additional $10 million before the health system would have to dip into its reserves.
Here are the five largest settlements since 2004, all of which addressed alleged negligence in standard of care:
$1,375,000 December 2009
$1,000,000 May 2010
$750,000 December 2004
$500,000 February 2009
$350,000 February 2009