Nicolas Espinosa’s hopes for his 11-year-old daughter, Julia, are basic and profound: He wants her to stay alive and perhaps be able to eat normally someday.

And she might, if she can get three organs transplanted — and if the U.S. immigration system doesn’t get in the way.

In a case that reflects the significant and often-heartbreaking failures in how the U.S. welcomes newcomers to the country, the Espinosas are confronting not just the nation’s complicated and expensive health care maze, but an immigration system that Congress has not reformed for decades. Despite calls for coherent reform, immigration policy has been largely set through scattershot legislation and whipsawing administrative actions, often modified by the courts.

That chaotic reality is threatening an American girl’s life.

Julia was born in Miami when her parents were attending college on student visas. She had a birth defect called volvulus, a twisted small intestine, and doctors saved her as a baby by removing most of the organ. Never able to eat normally, Julia has survived by getting carefully crafted daily infusions of nutrients through an intravenous port in her chest, Espinosa said.

It’s extremely expensive and specialized care that Espinosa said Julia could not get in his home country of Ecuador, where they had planned to return. Instead, the family moved to Seattle 10 years ago to be near Seattle Children’s Hospital, where specialists can manage Julia’s nutritional needs well. Still, getting nutrition through infusions is not something the human body was designed for, and it has done damage to her internal organs. She is on transplant lists for the small intestine she lost at birth, and to replace her deteriorating liver and pancreas.

Their daughter’s health circumstances would be challenging enough, but Espinosa and his wife, Maria Saenz, face an additional struggle — an ongoing battle with immigration authorities to stay and work in the U.S. legally.

For the second time in three years, Espinosa faces the prospect of losing permission to work, which would cost him not only his job providing tech support at a software company, but also his health insurance. Without health insurance, his daughter would lose her eligibility for transplants.

“We are relying on the current health insurance to keep her on the transplant list,” Espinosa said. “If I cannot keep my health insurance, then my daughter might not be eligible for a transplant.”

Espinosa is acutely aware of his precarious position, and acted early to renew his immigration status, known as medical deferred action. It’s a category in which the government says it will defer trying to deport someone so they can deal with a severe illness. People who have action deferred can also apply for a work permit. Espinosa applied to renew his deferred action in November, even though his current deferment was good until the end of July.

He heard nothing back from U.S. Citizenship and Immigration Services, however, until just recently, and the approval came only after inquiries to the agency from members of Congress and a reporter.

The family still can’t rest easy, though. Espinosa’s application for a new work permit has not yet been approved. He can still lose his job and insurance at the end of July if the new permit is not granted in time, which is far from a certainty.

A spokesperson for Seattle Children’s Hospital indicated officials there would work with the Espinosas to care for Julia if there is a lapse in her insurance, though her place in line on the transplant lists might have to be put on hold, leaving Espinosa to scramble for backup options like Medicaid.

Even with the remaining uncertainty — a long gap in coverage could still prove catastrophic — Espinosa said he is much more hopeful than he was just a week earlier, since work permits generally are granted with deferred action status. And uncertainty is something Espinosa has gotten used to in a country where there seems to be no rational system to deal with migrant families facing health crises.

“The problem is that there is no legal framework behind what I have,” Espinosa said. “Deferred action is not a visa, it’s just a decision from the government not to deport.”

If doctors can keep Julia alive, the family will face the same frightening prospect of losing legal status when this new deferral ends in two years.

Exactly how many other families face similar circumstances is not clear. Katie Tichacek, a spokesperson for the citizenship agency, would not provide data showing how often such cases arise, and no statistics are publicly available. Data obtained by WBUR after Massachusetts lawmakers asked for it in 2020 said that there were more than 700 requests nationwide for deferred action for medical reasons in 2018 and that fewer than half were approved. Those numbers plummeted in 2019.

That was when Julia faced the first immigration-related threat to her life. At the time, the Trump administration suspended all medical deferred action. Facing lawsuits and a public outcry, the administration relented, but Espinosa couldn’t work legally for a year and a half. Working off the books could have put him in further jeopardy. He said they survived on “mercy and family support” from relatives in Ecuador.

It hasn’t been a life of gloom and doom, though. The family has managed Julia’s condition so that she goes to school when there are no pandemic restrictions, they travel, and she pursues her interests. Aside from being unable to survive by eating, she’s like any other girl.

“We’ve tried to live 100%, because we’ve been lucky to have Julia so far,” Espinosa said. “We’ve been always told that she might not make it. It was originally the first month of her life, then it was the first year, and then it’s two years, and then the next whatever period.”

They’ve beaten the odds by doing anything and everything that is in their control. What isn’t in their control is the federal bureaucracy. “We’re here still, but, yeah, we have to fight immigration,” Espinosa said.

Even some of the things that are in their control, like choosing where to live to give Julia the best shot, can be problematic. Espinosa said some other states and regions of the country tend to have greater availability of organs. While Julia remains stable, staying where they are makes the most sense. The calculus would change if the deterioration of Julia’s liver were to accelerate.

“If that is the case, then we have to contemplate how are we going to be treated in these other states,” Espinosa said. “Like for example, getting a simple thing like your driver’s license, it’s not that simple when you have deferred action.”

Mahsa Khanbabai, a board member for the American Immigration Lawyers Association, said the problem that Espinosa and other people in obvious need face is that Citizenship and Immigration Services is overwhelmed. An increasingly centralized and underfunded bureaucracy is not up to the task. “This is a very good example of a broken system,” Khanbabai said, noting that many more people are in less dramatic but similar situations. “There’s just a lot of heartbreak that could easily be fixed with immigration reform.”

Tichacek said in a statement that the agency does not comment on specific cases but that it “is committed to promoting policies and procedures that protect those most vulnerable” and is working hard to rebuild trust with immigrants and expand access to vital immigration services.

Espinosa is all too aware that even with media attention, legal assistance, and help from lawmakers, his family could still fall through the cracks. He doesn’t know what could happen then, but he will use whatever tools he can to save his child.

“I don’t know what I’ll need, and I’ll do whatever it takes,” he said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.


This story can be republished for free (details).

By Michael McAuliff
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.