By Michael McAuliff -
KHN
Nicolás Espinosa's wishes for Julia, his 11-year-old daughter, are both simple and profound: he wants to continue living and, perhaps, one day, eat normally.
All this could happen if the girl receives three organ transplants.
And if the immigration system does not prevent it.
In a case that reflects significant and often harrowing failures of the system, the Espinosas confront not only the complicated and expensive maze of health care in the United States, but also an immigration system that Congress has not reformed in decades.
That chaotic reality threatens the life of an American girl.
Julia was born in Miami when her parents were attending college on student visas.
She was born with a birth defect called a volvulus, a twisted small intestine, and doctors saved her as a baby by removing most of her organ.
Julia Espinosa is an 11-year-old US citizen in need of high-tech care and three transplants due to a rare birth defect.KHN
Having never been able to eat normally, Julia has survived thanks to carefully crafted daily infusions of nutrients, which she ingests through an IV placed in her chest, Espinosa explained.
It is very expensive and specialized care that, according to Espinosa, Julia would not be able to obtain in Ecuador, where they planned to return.
The family moved to Seattle 10 years ago to be close to the children's hospital, where specialists can well manage Julia's nutritional needs.
Still, obtaining nutrition through infusions is not something the human body is designed to do, and the process has damaged her organs.
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Julia is on the transplant lists for the small intestine, and to replace her failing liver and pancreas.
Their daughter's health is already a challenge, but Espinosa and his wife, María Sáenz, face an additional struggle: an ongoing battle with immigration authorities to stay in the country.
For the second time in three years, Espinosa faces the prospect of losing her work permit, which would cost not only her job as a tech support provider at a software company, but also her health insurance.
Without coverage, her daughter would lose her eligibility for transplants.
“We rely on health insurance to keep her on the transplant list,” Espinosa said, “if I can't keep my insurance, my daughter may not be eligible for a transplant.”
Julia has survived by receiving daily infusions of nutrients through an IV in her chest.
KHN
Espinosa is aware of her precarious situation and acted quickly to renew her immigration status, which is known as
deferred medical action
.
It is a category in which the government postpones a deportation so that the person can deal with a serious illness.
People who have deferred action can also apply for a work permit.
Espinosa requested to renew his deferred action in November, even though his current extension runs until the end of July.
However, he received no news from immigration until recently, and approval came only after inquiries to the agency from members of Congress and a reporter.
However, the family still cannot rest easy.
Espinosa's application for a new work permit has not yet been approved.
She still stands to lose her job and insurance at the end of July if the new permit doesn't arrive in time.
A spokesperson for Seattle Children's Hospital said they would work with the Espinosas to care for Julia if her insurance expires, though her place on the transplant list may have to be suspended,
leaving Espinosa with options like Medicaid.
Even with the current uncertainty — a gap in coverage could prove catastrophic — Espinosa said he is more hopeful than he was a week ago, since work permits are typically granted with deferred action status.
And the uncertainty is something Espinosa has grown accustomed to in a country where there seems to be no rational system to help migrant families facing health crises.
“The problem is that there is no legal framework,” Espinosa said.
“Deferred action is not a visa, it is just a government decision not to deport.”
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If doctors can keep Julia alive, the family will face the same terrifying prospect of losing legal status when this new stay ends in two years.
It is unclear how many other families face similar circumstances.
Katie Tichacek, a spokeswoman for the citizenship agency, did not provide data, and no statistics are publicly available.
Data obtained by WBUR after being requested by Massachusetts lawmakers in 2020 revealed that, in 2018, there were more than 700 requests for deferred action for medical reasons.
Less than half were approved.
It was then that Julia faced the first threat to her life related to immigration.
At that time, the Trump Administration suspended all deferred medical action.
Facing lawsuits and public protests, the Administration relented,
but Espinosa was unable to work legally for a year and a half.
However, not everything has been sadness.
The family has managed Julia's condition so that she can attend school, travel and do activities that she enjoys.
Julia's family has done everything in their power to help the girl.
What they cannot control, they say, is the immigration bureaucracy.
KHN
"We have tried to live 100%, because until now we have been lucky to have Julia," Espinosa said.
“We have always been told that she may not survive.
It was originally the first month of her life, then it was the first year, and then two years, and then the next period.”
They have beaten all odds by doing everything in their power.
What they cannot control is the federal bureaucracy.
Even some of the things that are in your control, like choosing where to live to give Julia the best chance, can be problematic.
Espinosa said that some other states and regions of the country may have a higher availability of organs.
As long as Julia stays stable, staying where they are makes more sense.
It would be different if Julia's liver continued to deteriorate.
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Mahsa Khanbabai, a board member of the American Immigration Lawyers Association, said the problem facing Espinosa and others with obvious needs is that Citizenship and Immigration Services are overwhelmed, bureaucratic and underfunded, not up to the task. of the task.
"This is a very good example of a broken system
," said Khanbabai.
"It could be easily fixed with immigration reform."
Tichacek said in a statement that the agency does not comment on specific cases, but added that it "is committed to promoting policies and procedures that protect the most vulnerable," and that it is working hard to rebuild trust with immigrants and expand access to services. vital services.
Espinosa is well aware that even with the media attention, legal assistance and help from lawmakers, her family could still fly under the radar.
He doesn't know what could happen then, but he said, "I will do whatever it takes to save my daughter."
KHN (Kaiser Health News) is the newsroom of KFF (Kaiser Family Foundation), which produces in-depth health journalism. It is one of three major programs of KFF, a nonprofit organization that analyzes the nation's health and public health issues.