Saturday, May 08, 2010

For a Mother:

On this mother's day, I can't think about much more than a mother and son (and family) I don’t know how to help. I thought I did, for a while. But now we’ve all been put in a position where we’ve been asked to wait and see, even though time itself is the enemy.

Her name is Karina. Her son, Eduardo Loredo, was 14 years old when I met him. Within 5 months, this athletic kid began to feel ill, was hospitalized and diagnosed with dilated cardiomyopathy. He spent 3 months in the hospital learning that this disease was steadily going to enlarge his heart until it would no longer function. He was told he could get a heart transplant through another facility just 200 miles away.

Then, the story changed. He was no longer eligible for the heart transplant. Though doctors and hospital representatives hinted around about his weakened condition playing a role, the only thing he and his mother, Karina, were told for certain was that he would need $500,000 for a heart transplant. And, initially, they were told that he needed $100,000 to even be put on a waiting list.

Karina and Eduardo have no medical insurance, and he is ineligible for Medicaid in my state because he is undocumented. His father lives in Mexico, and after her split with him, Karina, Eduardo and his little sister moved here to live with Karina's sister. Eduardo's little sister is a U.S. citizen, and the family is caught between countries, neither country willing to put him on a heart transplant waiting list. So, his friends, including college students I work with, started to raise money and awareness, working with national health care and poor people’s right’s organizations. This was just before the holiday season, and we had some hope that a Santa Claus might appear if we made enough noise. We put out a call to people in the medical profession, politicians and organizations both nationally and internationally.

Our collective effort led to about $8,000, but it also led to a circling of the wagons by the very hospital that was keeping him alive. Folks there pulled me aside and told me we needed to stop “all of this media” before something bad happened. They said they were worried about him being deported. The hospital, the Mexican Consulate and other social service organizations began to urge Karina to take her son back to Mexico, although there was no commitment from Mexico that he would be put on a transplant waiting list. On the other hand, there was a letter from a local representative that urged him, for his health, not to leave the country.

Since Karina only speaks Spanish, she has often been isolated throughout this ordeal. The doctors and her other professional advisors only spoke to her through their translators. And although many of us have volunteered to help the family through consultations, only family members who speak very little English have been allowed to attend any of these meetings.

After the holidays, the hospital proposed to give Eduardo a procedure, cautioning Karina that the anesthetic necessary may kill him. Then they rescinded the offer.

That's when the stories Karina was hearing began to change. A hospital in Monterey, Mexico, where the Consulate wanted to send him, said Eduardo didn’t need a heart transplant. Soon, the hospital that originally said they would do the transplant declared that the boy may get better without a transplant. Now, the hospital that is taking care of him is saying the same thing. Karina, and everyone else who cared about the case, was terrified he was being sent home, yet again, to die.

One of the best pediatric heart hospitals in the Western Hemisphere has been reviewing the case, but they have not ruled on it yet, and if he goes outside the country to get a transplant, he may not be able to return. The family could be torn apart, or the sister would have to leave her home in the U.S. to be with her mother and brother. Of course, they would all go in a second if there was a clear chance, but these are just some of the prices they’d pay.

We have all now been given many reasons to keep quiet, including warnings that raising the case publicly was scaring doctors and hospitals away, yet we feel the serious danger in the silence. There could be something to the fact that he no longer needs a heart transplant, and we sure don’t want him to get one if he doesn’t need it. We also don’t want to risk his life based on the ever-changing judgments of people we’ve learned not to trust.

He is stronger than before. While he was pale as a ghost, he now has color, and while he was depressed and prone to tears, he laughs more and more these days. He had been written off when we met him, and today he seems like a young man with hope. It’s hard not to think a healthy psyche could give him a chance he wasn’t getting when he was originally sent home with, at most, three years to live.

This case raises so many questions about the justice of our health care system:

Why are life-saving procedures priced so high that working families can’t afford them?

Is the heart of a teenager not born in this country less important than an “American” heart?

What is a family that doesn’t speak very much English supposed to do to advocate for itself in this country?

What do we do when all of the usual social aid professionals that serve a Spanish-speaking community come to some friendly agreement that a case is simply a loss?

Is a second opinion, a truly independent second opinion, only for the rich in this country?

In other words, is something that should be a right in a just health care system only a luxury for a select few?

And what do you do when you are warned by social workers, as Karina was, that “you shouldn’t bite the hand that feeds you”?

(Of course, what that social worker didn’t say was this hand is also a hand that’s likely to kill your son. For now, it’s holding Eduardo dangling by a thread and threatening to lose its grip if Karina doesn’t play by its rules.)

What kind of a system pledges to fight injustice and, when faced with it, only multiplies the wrongs?

What kind of a system addresses a life-and-death emergency with smoke and mirrors, apathy and cynicism?

For now, we plan a new press release to ask for help finding a truly independent second opinion on Eduardo's condition. Representatives from our little ad hoc group plan on attending the National Council for La Raza conference and the U.S. Social Forum in June to testify on Eduardo's behalf about these issues and to network with others to address them.

Where I have found hope is with students like Will Suarez, Maribel Padilla and their organization LUNA, who were among the first to raise awareness about these issues. I have also found hope in friends such as Monique Maes, a poet and artist, who has worked tirelessly to network with others in the community and keep the attention on Eduardo's case, running down every lead and every source of revenue imaginable.

I have also found boundless hope in Eduardo's bravery and that of his mother, Karina. All of us who have been brought together by this family admire and love this woman who has done everything she knows how to do to help her son. On this mother's day and every mother's day to come, we dedicate ourselves to doing everything we can to address the questions above. And I certainly look forward to a long future working with Eduardo and Karina to find some answers.

My thanks for Miguel Morales for taking the above picture of Monique, Karina and Eduardo, and for all he does with LUNA, the Latino Writer's Collective and on and on.