Julia Espinosa’s organ transplant jeopardized by immigration bureaucracy
By Michael McAuliff | KHN
Nicolas Espinosa’s hopes for his 11-year-old daughter, Julia, are fundamental and deep: he wants her to stay alive and maybe one day be able to eat normally.
And she could, if she can get three organs transplanted – and if the US immigration system doesn’t interfere.
In a case that reflects the significant and often heartbreaking failures in how the United States welcomes newcomers to the country, the Espinosas face not only the country’s complicated and expensive health care maze, but a system of immigration that Congress has not reformed in decades. Despite calls for consistent reform, immigration policy has largely been defined by scattered legislation and arbitrary administrative measures, often changed by the courts.
This chaotic reality threatens the life of an American woman.
Julia was born in Miami when her parents were attending college on a student visa. 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 survived by receiving carefully prepared daily infusions of nutrients through an intravenous port in her chest, Espinosa said.
It’s extremely expensive and specialized care that Espinosa said Julia couldn’t get in her 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 properly manage Julia’s nutritional needs. Yet, feeding through herbal teas is not something the human body was designed for, and it has damaged its 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 medical condition would be difficult enough, but Espinosa and his wife, Maria Saenz, face an additional struggle: an ongoing battle with immigration authorities to legally stay and work in the United States.
For the second time in three years, Espinosa faces the prospect of losing his work permit, which would cost him not only his tech support job at a software company, but also his health insurance. Without health insurance, her daughter would lose her eligibility for transplants.
“We’re counting on current health insurance to keep her on the transplant list,” Espinosa said. “If I can’t keep my health insurance, my daughter might not be eligible for a transplant.”
Espinosa is acutely aware of his precarious situation and acted early to renew his immigration status, known as Deferred Medical Action. This is a category in which the government says it will postpone trying to deport someone so that they can deal with serious illness. Persons whose action is deferred can also apply for a work permit. Espinosa requested renewal of his deferred action in November, although his current adjournment was valid until the end of July.
However, he heard nothing from U.S. Citizenship and Immigration Services until recently, and approval only came after inquiries with the agency by members of Congress and a journalist.
The family still can’t rest easy. Espinosa’s application for a new work permit has yet to be approved. He could still lose his job and his insurance at the end of July if the new permit is not granted in time, which is far from certain.
A spokesperson for Seattle Children’s Hospital said officials would work with the Espinosas to care for Julia in the event of her insurance default, although her place on transplant lists is to be suspended, leaving Espinosa scramble for backup. options like Medicaid.
Even with the uncertainty that remains – a long coverage gap could still prove catastrophic – Espinosa said he was far more hopeful than he was a week earlier as work permits are usually granted with deferred action status. And the uncertainty is something Espinosa has grown accustomed to in a country where there doesn’t seem to be a rational system for dealing with migrant families facing health crises.
“The problem is there’s no legal framework behind what I have,” Espinosa said. “Deferred action is not a visa, it’s just a government decision not to deport.”
If doctors can keep Julia alive, the family will face the same chilling prospect of losing their legal status when this new postponement ends in two years.
The exact number of other families facing similar circumstances is unclear. Katie Tichacek, spokeswoman for the citizenship agency, did not provide data showing how often such cases occur, and no statistics are publicly available. Data obtained by WBUR after Massachusetts lawmakers requested it in 2020 indicated that there were more than 700 requests nationwide for deferred action on medical grounds in 2018 and less than half had been approved. Those numbers dropped in 2019.
It was then that Julia faced the first immigration-related threat to her life. At the time, the Trump administration suspended all deferred medical action. Facing lawsuits and a public outcry, the administration relented, but Espinosa was unable to work legally for a year and a half. Working in the books could have put him in more danger. He said they survived thanks to the “mercy and family support” of their relatives in Ecuador.
It hasn’t been a life of sadness and woe, however. The family has managed Julia’s condition so that she attends school when there are no pandemic restrictions, they travel and she pursues her interests. Besides being unable to survive on food, she is like any other girl.
“We tried to live 100% because we were lucky to have Julia so far,” Espinosa said. “We were always told that she might not make it. It was originally the first month of his life, then it was the first year, then it was two years, then the next, whatever the period.
They beat the odds by doing everything within their control. What is not under their control is the federal bureaucracy. “We are still here, but, yes, we have to fight immigration,” Espinosa said.
Even some of the things that are within their control, like choosing where to live to give Julia the best chance, can be problematic. Espinosa said some other states and areas of the country tend to have greater organ availability. While Julia remains stable, staying where they are makes the most sense. The math would change if Julia’s liver deterioration were to accelerate.
“If that’s the case, then we have to think about how we’re going to be treated in those 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 of the American Immigration Lawyers Association, said the problem Espinosa and others in need clearly face is that citizenship and immigration services are overwhelmed. An increasingly centralized and underfunded bureaucracy is not up to the task. “It’s a very good example of a system failing,” Khanbabai said, noting that many more people are in less dramatic but similar situations. “There are just a lot of heartaches that could easily be resolved with immigration reform.”
Tichacek said in a statement that the agency does not comment on specific cases but is “committed to promoting policies and procedures that protect the most vulnerable” and is working hard to rebuild trust with immigrants and expand the 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 slip through the cracks. He doesn’t know what might happen then, but he will use whatever tools he can to save his child.
“I don’t know what I will need, and I will do whatever it takes,” he said.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polling, KHN is one of the three main operating programs of KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.