June 2, 2000

Mexican transplant patients pose quandary for doctors

By EDWARD HEGSTROM
Copyright 2000 Houston Chronicle

Jessica Flores is just 2 years old and already dying, a child with a bad liver born in a country where liver transplants are rarely done.

The odds seem to work against the little girl from Mexico City. But her family refuses to let her give up without a fight.

When Mexican doctors told Jessica's parents their only hope was to seek treatment in the United States, the family of three packed up their belongings, scraped together just enough money for air fare, and got on a jet bound for Houston. They have spent the last several months begging doctors here to put Jessica on a waiting list for a liver transplant.

"We came here to give our daughter a chance to continue living," said Jessica's father, Armando Flores.

The Flores family is part of a small but growing movement. Just in the past year, at least five Mexican families have come to Houston in search of the liver transplants their children need to stay alive -- transplants they could not get back in Mexico.

By crossing the border in search of livers, the families have forced doctors to confront a number of troubling ethical questions involving financing and organ distribution. Even in this country, donated livers are so scarce that more than 1,000 U.S. citizens die every year while awaiting one.

Most doctors say they won't even consider bending federal guidelines that permit the allocation of no more than 5 percent of donated livers to foreigners. They also won't allow foreigners a place on the waiting list until they have $250,000 cash up front to pay for the operation.

"While the plight of poor Mexican children tugs on the heartstrings, we also have American children dying on the waiting list," notes Dr. R. Patrick Wood, who is the head of liver transplants for St. Luke's Episcopal Hospital and also performs the operation at Texas Children's Hospital, where most of the Mexican children are being seen.

Of the five children brought here in the last year, one died while awaiting a transplant, one received a liver and the other three are still desperately trying to raise the money they need for the operation.

Because the one child who received a liver -- Damaris Cantu, age 2 -- got hers only last January, the other three Mexican families have been told that they will have to wait until next year before their names can be added to the waiting list.

Acting on their doctors' advice, two of the families have undergone tests to see if the mothers could donate part of their own livers to keep their children alive, even though the operation is risky for the mother.

Jessica Flores' mother, Olga, is now being tested to see if she could donate to her daughter.

If Olga Flores is not compatible, the family will be right back where they started: pleading for a liver, begging for dollars.

"These children haven't done anything wrong, and yet they are condemned to die," said Armando Flores. "They don't understand politics and borders and laws. All they want is to play -- to live."

Virtually all of the Mexican children have cirrhosis of the liver, typically a result of hepatitis.

Flores and the other parents all praise the United States for at least allowing them into the country to try to raise money for a transplant. "The gratitude we feel for this country is immense," Flores said.

Most of the parents acknowledge that any blame for their predicament should be placed on their own government.

"Mexico is a large and powerful nation," said Fidencio Acevedo, a native of Matamoros who has brought his 15-year-old daughter Claudia to Houston in search of a transplant. "So why do we have to run to another country to save our child? Where are our taxes going?"

Mexico has been building its own transplant program in the past few years, said Ramiro Nepita, who heads the Houston office of the Mexican Institute of Social Security, the government medical service. Yet the numbers remain small.

Mexico, a nation of nearly 100 million people, performed 48 liver transplants last year. By comparison, the United States, with a population of roughly 250 million, had 4,700 liver transplants in 1999.

But even in the United States, donor livers are in short supply. More than 15,000 people are on a waiting list for a liver.

At one time, experts proposed excluding foreigners as potential organ recipients, according to Bob Spieldenner, spokesman for the United Network for Organ Sharing (UNOS), the policymaking organization for organ distribution. But some doctors complained that barring foreigners would be unethical.

UNOS eventually set the threshold for nonresident foreign recipients at 5 percent, a limit hospitals have always respected, according to Spieldenner. Hospitals have the right to demand that foreigners show they can pay for the operation before being put on the waiting list.

But once foreign patients are on the list, they must receive the same treatment U.S. citizens do.

There have been scattered reports of Mexicans coming to Texas and California in search of livers for years. But many Mexicans learned about American liver transplants after famous Mexican television personality Raul Velasco came to Houston to receive one in 1998. Mexican television and newspaper reporters came to Houston to broadcast news of Velasco's successful transplant that spring.

Velasco returned to Mexico City vowing to lobby for improved transplant services in his own nation. But his personal success probably helped spread the word that Mexicans in need of a liver should head to Houston, according to MaryRuth Martinez, a local activist who educates Hispanics about organ donations.

Damaris Cantu's parents came to Houston in October 1998, after raising $250,000 in Mexico to pay for the U.S. operation for their young daughter. Damaris got on the waiting list and finally got a liver early this year.

Another infant, Jasmine Bautista, came to Houston just last March. The Bautistas came with almost no money, but Raul Brindis, disc jockey at the Spanish-language radio station Estereo Latino, raised more than $360,000 for the baby in just 48 hours.

Jasmine Bautista died in August, before she could receive a transplant. Her parents returned the money to Estereo Latino.

Olga and Armando Flores say they got a donation of $2,000 from the group for Jessica. The Acevedos received $100,000 toward the liver transplant for Claudia from Estereo Latino.

The Floreses, meanwhile, have found other ways to raise the money they need before the operation. A Mexican immigrant with a restaurant has donated food, and a car dealer at Interstate 45 and Wayside has donated space so that the family can set up a barbecue stand where they sell fajitas every Saturday.

Jessica, who came here at just under 2 years old and unable to talk, is now 29 months old and able to chatter away in Spanish. She's particularly fond of watching Barney in Spanish, which her parents have on video. She knows she is sick, but she has never met healthy children, so she thinks of that as normal.

"If we forget to give her her medicines, she reminds us," Armando Flores said.

Olga Flores' parents have been able to come to Houston to help. And with the donations they have gotten so far, the family has been able to rent a clean apartment in southwest Houston.

Still, the $100,000 they have raised is far short of the $250,000 they will need to begin treatment.

"The doctors say Jessica needs surgery," her father said. "They also say she won't get it until we can pay the deposit."

At least five Mexican children have come to Houston recently in search of liver transplants. Most have struggled to raise the $250,000 needed to get the operation.

· Damaris Cantu. Born with liver failure in Monterrey, Mexico, in 1998, Damaris was given six months to live. For reasons no one can explain, Damaris became a cause celebre to the national media in Mexico. The family was able to raise the $250,000 they needed from donations in Mexico before even coming to Houston. Damaris, now 2, got a liver transplant at Texas Children's Hospital this past January.

· Jasmine Bautista. Also born with liver failure, Jasmine's parents brought her to Houston from their home in San Luis Potosi in March 1999 when she was 3 months old. She died in August, after a local radio station had helped raise $360,000 for her cause.

· Jessica Flores. Jessica was also born in 1998 with liver failure. The native of Mexico City was brought to Houston in September 1999 after doctors told her parents it was their only hope. Her family has raised about $100,000.

· Claudia Acevedo. The 13-year-old from the border town of Matamoros came to Houston four months ago. Her parents say they learned of the possibility of seeking a liver in the United States from watching Mexican television. Claudia has been told she won't make it without a liver. "I almost always have to be tranquil," Claudia says in Spanish. "People in Houston have been very friendly. But I'm not in my country, and I don't understand the language."

· Rigoberto Delgado. Also 13, Rigoberto came to Houston last year after a series of unsuccessful surgeries in his native state of Guerrero. His father was already here. The family has managed to raise just $10,000 so far.