Girl who's here illegally needs kidney transplantThursday, December 07, 2006
By Nardy Baeza Bickel and Shandra Martinez
The Grand Rapids Press
For the past three years, Audelia Garcia has made tough choices, knowing the wrong one could be a death sentence for her youngest daughter, Liliana Cruz-Garcia.
Since Liliana's kidneys began deteriorating at age 10, Garcia has sold all her possessions, broken laws and, at times, put her daughter in danger to save her life.
Now, after risking Liliana's life to bring her to relatives in West Michigan, a kidney transplant is just beyond reach. She can't afford the drugs that would keep Liliana's body from rejecting her sister's donated kidney. The teen is in this country illegally, making her ineligible for billions of dollars set aside annually to treat kidney patients in the United States.
Liliana's plight illuminates a poignant aspect of the immigration debate that has divided this country. The price of providing health care to undocumented immigrants is estimated to be in the billions. But denying life-saving health care to a child living in our midst seems unthinkable to many in a nation founded by immigrants.
Garcia believes she had no choice but to bring her sick daughter across the border after her request for a visa was denied.
"What else could I do? I didn't come here to get papers, or to make money. I came here to save my daughter's life. In Mexico, if you don't have money, they'll just let you die. Here, she has a chance," Garcia said in Spanish.
But in order to reach out to strangers whose donations might save her daughter's life, she risks attracting the attention of immigration officials who could deport her entire family.
The wrong decision could mean her daughter returns to her native country, where she won't have access to the medical care that will keep her alive.
After-care is essential, expensive
Performing the operation without a guarantee of after-care would be unethical, say officials at DeVos Children's Hospital, where the girl has been treated for 15 months.
The drugs alone cost about $24,000 a
year, excluding the cost of seeing a kidney specialist every month for the rest of her life. The bill would be in the millions of dollars over Liliana's life. That's a fortune to a family struggling to make $1,200 a month.
But the after-care is considerably less than the $15,000 a month currently being spent to provide Liliana with three dialysis treatments a week, provoking yet another dilemma. The hospital can't perform the transplant without the after-care guarantee, but also cannot afford to provide medical care for Liliana for the rest of her life, said Bruce Rossman, spokesman for Spectrum Health.
"This case would require endless resources. If you do it for one, where do you draw the line for the next person? It creates a slippery slope that could jeopardize a wide range of care we provide for a lot of children," Rossman said.
Immigration issues
Therein lies the bigger issue, says Steven Camarota, head of research at the Washington-D.C.-based Center for Immigration Studies. The U.S. is picking up the cost for Mexico and other countries' substandard health care, says Camarota, whose organization's mission statement says it "seeks fewer immigrants but a warmer welcome for those admitted."
Camarota says Liliana's treatment could come at the expense of U.S. citizens.
"We have to realize there are losers here. They are not just taxpayers but Americans who need health care but can't get it because the money is being used for people who aren't supposed to be in this country," Camarota said.
Undocumented immigrants account for 14 percent of the country's uninsured patients, according to a report by Camarota's organization. Paying for their medical care -- excluding costs picked up by state or local governments and charities -- added up to $4.7 billion in 2002. But undocumented immigrants paid $7 billion into Social Security and Medicare, according to the report, based on census data.
While some see a tax burden, Lu Reyes sees a child's life at stake.
"This is one of God's children. We have the medication available here to help her," said Reyes, a retired social worker in Holland. The longtime community activist has made dozens of calls to friends and strangers trying to raise donations to pay for Liliana's after-care.
Federal law requires hospitals to provide life-saving medical care to anyone who comes through the doors.
That mandate can put hospitals in difficult situations and force hard decisions about patient care, said Tomas Tomlinson, director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University's College of Human Medicine.
Desperate choices
When her daughter's kidneys began to fail, Garcia was able to pay for private medical care in Mexico at first. She used the money she received from Liliana's father, who supported the family by working across the border in the U.S. When he lost his job, the help stopped coming.
One by one, Garcia sold all her possessions. Then the family home. She considered taking Liliana to Mexico's public hospitals, but a visit to one made her believe her daughter would die within its grimy walls.
The Mexican government has a program to cover some expenses for transplants and medicines for people who have paid into the country's social security system. But those who do not qualify have little chance of getting a transplant.
Garcia decided her daughter's only chance was in the United States. She applied for a tourist visa to join her two older sons and a daughter, who would donate her kidney to Liliana. But the visa was denied because, with all her family here and no property remaining Mexico, she would have no reason to return.
Applying for a medical visa would have required Garcia to show she or another entity could pay for her daughter's medical care.
Garcia felt her only option was an illegal border-crossing, a dangerous undertaking for anybody, let alone a sick child carrying a dialysis bag.
The memories of how she made that decision brought Garcia to tears as she spoke in her Holland mobile home.
A "pollero," a smuggler charging a fee to cross people illegally, took pity on her and gave them a discount. With the help of family members, they paid the fees and crossed the border, sometimes walking, sometimes in a car.
After her arrival, Liliana spent five weeks in Driscoll Children's Hospital in Corpus Christi, Texas, fighting for her life. But the hospital wasn't going to provide Liliana with either long-term dialysis or a kidney transplant, forcing Garcia to share her plans for coming to West Michigan.
Driscoll officials contacted DeVos Children's Hospital, requesting treatment for Liliana. The request was declined because the girl wasn't eligible to receive federal funding, Rossman said.
Before discharging the girl, Driscoll found a Mexican hospital where Liliana could receive treatment for her kidney failure, and provided bus tickets, Rossman said.
With her resources exhausted, Garcia wasn't going back to Mexico. She decided to stick with her plan to join family in Michigan.
When Liliana arrived at the emergency department at Spectrum's Butterworth campus in August 2005, she was suffering from kidney failure and an enlarged heart. The latter was caused by not having access to dialysis.
"She was almost at the stage where she needed a heart transplant along with a kidney transplant," Rossman said.
When her condition stabilized, she was transferred to outpatient dialysis.
Giving Liliana a transplant could put the hospital at odds with federal regulators. Current rules don't address providing kidney transplants for undocumented residents, even if the patient doesn't need to be put on a waiting list for a donated kidney.
Within weeks, the federal government expects to issue guidelines for undocumented immigrants in need of transplants, Rossman said.
DeVos officials hope to find a solution that will give Liliana a transplant but avoid opening the door to others in dire situations.
"Everybody wants to see a happy ending on this case, but for this being the first big issue with an undocumented person who needs a major surgery, we are finding our way through without a lot of guidance," Rossman said.
So far, Liliana's medical care has cost the hospital $300,000, which is being written off as charity care. The $50,000 transplant surgery likely would be absorbed by the hospital and surgeons.
Havoc in a young life
Meanwhile, Liliana worries about the toll her illness is taking on her mother.
"Sometimes I want to die," Liliana said, admitting she feels she is a burden on her mother.
"I just don't want to be like this anymore," she said, lowering her eyes. "I just want to have my transplant."
While Liliana attends school and has friends, she can't experience what girls her age take for granted: bike rides, dancing, sleep-overs, swimming. Those activities could raise her blood pressure or trigger a deadly infection.
Because Liliana is doing well with dialysis, she could live years and possibly decades without a transplant, Rossman said. But he understands why Garcia is determined to get her daughter a transplant.
"If I was in that situation, and there was hope for a long and productive life for my child, I can't say I wouldn't do everything I could," Rossman said.
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