Nicolas Espinosa’s hopes for his 11-year-old daughter, Julia, are basic and profound: he wants to be able to survive and possibly one day be able to eat normally.
And maybe he can, if he can transplant three organs – and if the US immigration system doesn’t stop him.
In a case where the United States welcomes newcomers to a land of significant and often heartbreaking failure, Espinosa is facing not only the country’s complex and costly healthcare maze, but also an immigration system that Congress has not reformed for decades. Despite calls for comprehensive reform, immigration policy has largely been determined by the enactment of the Scotshot Act and by administrative action, often revised by the courts.
That chaotic reality is threatening the life of an American girl.
Julia was born in Miami when her parents were studying in college on a student visa. His birth defect was a curved small intestine called the vulvulus, and doctors removed most of the organs and saved him as a child. Espinosa said, never being able to eat normally, Julia survives by carefully caring for nutrition through a vein port in her chest.
It was extremely expensive and special care that Espinosa said Julia could not return to her home country of Ecuador, where they planned to return. Instead, the family moved to Seattle 10 years ago to live near Seattle Children’s Hospital, where specialists can better manage Julia’s nutritional needs. Yet, getting nutrition through infusion is not something that was designed for the human body and it has damaged its internal organs. She is on the list of small bowel transplants lost at birth and for her damaged liver and pancreas transplants.
Their daughter’s health will be challenging enough, but Espinosa and his wife, Maria Senz, will face an additional challenge – an ongoing battle with immigration authorities to stay and work legally in the United States.
For the second time in three years, Espinosa faces the prospect of losing his work permit, which would require him to pay not only for technical support at a software company, but also for his health insurance. Without health insurance, her daughter would lose her eligibility for replacement.
“We’re relying on current health insurance to keep her on the transplant list,” Espinosa said. “If I can’t keep my health insurance, my daughter may not be eligible for a transplant.”
Espinosa was acutely aware of her precarious position, and acted quickly to renew her immigration status, known as a medical delay measure. This is a department where the government says it will delay someone’s deportation attempt so that they can deal with a serious illness. Those who have suspended work can also apply for a work permit. Espinosa applied for a renewal of his suspended order in November, although his current delay was good until the end of July.
He has not heard anything from the U.S. Citizenship and Immigration Services, though until recently, and the approval came only after a search of the agency by members of Congress and a reporter.
Although the family still cannot rest easily. Espinosa’s application for a new work permit has not yet been approved. He could still lose his job and insurance by the end of July if the new permit is not granted on time, which is far from certain.
A spokesman for Seattle Children’s Hospital indicated that officials would work with Espinosa to take care of Julia if there was a flaw in her insurance, and although her place on the transplant list could be retained, Espinosa would have to be shaken for backup. Alternatives like Medicaid.
Even with the remaining uncertainty – a long gap in coverage could still prove disastrous – Espinosa said he was much more optimistic than just a week ago, as work permits are usually granted with delayed action status. And the uncertainty is something that Espinosa has become accustomed to in a country where there seems to be no logical way to deal with immigrant families facing a health crisis.
“The problem is there is no legal framework behind what I have,” Espinosa said. “The delayed move is not a visa, it’s just a decision not to deport from the government.”
If doctors could keep Julia alive, the family would face the same dire possibility of losing their legal status if the new suspension ends in two years.
It is not clear exactly how many families face similar situations. Katie Tichachek, a spokeswoman for the Citizenship Agency, did not say how many such cases had been reported, and no statistics were available. Data obtained by WBUR after Massachusetts lawmakers asked for it in 2020 stated that in 2018 there were more than 700 requests nationwide for action suspended due to medical treatment and less than half were approved. These numbers are down in 2019.
It was then that Julia faced the first immigration-related threat of her life. At the time, the Trump administration had suspended all medical treatment measures. The administration was silent in the face of lawsuits and public outrage, but Espinosa could not function legally for a year and a half. Closing the book could put him in even more danger. He said they survived with “mercy and family support” from relatives in Ecuador.
Although it was not a life of darkness and destruction. The family manages Julia’s condition so that when she goes to school there are no epidemic restrictions, they travel and she follows her interests. Although she could not survive on food, she was like any other girl.
“We tried to survive 100%, because we are lucky to have Julia so far,” Espinosa said. “We have always been told he could not do it. It was basically the first month of his life, then it was the first year and then it was two years and any period after that. “
They have overcome adversity by doing everything and everything under their control. What they do not control is the federal bureaucracy. “We’re still here, but, yes, we have to fight immigration,” Espinosa said.
Even some things that are in their control, such as choosing where to stay to give Julia the best shot can be problematic. Espinosa said the availability of organs is higher in some other states and regions of the country. Although Julia stays stable, it makes the most sense to stay where they are. If Julia’s liver deteriorates, the calculus will change.
“If that is the case, then we have to think about how to deal with these other states,” Espinosa said. “For example, getting a simple thing like your driving license, it’s not so easy when you step back.”
Mahsa Khanbabai, a board member of the American Immigration Lawyers Association, said the problems that Espinosa and other people need to face are overwhelmed by citizenship and immigration services. An increasingly centralized and less-funded bureaucracy cannot do the job. “It’s a very good example of a broken system,” Khanbabai said, adding that many more people are less dramatic but in the same situation. “There are many heartbreaks that can be easily fixed through immigration reform.”
Tichachek said in a statement that the agency did not comment on specific cases but was “committed to promoting policies and practices that protect those most at risk” and was working hard to rebuild trust with immigrants and expand access to important immigration services.
Espinosa is all too aware that despite media attention, legal aid and the help of lawmakers, her family could still fall through the cracks. He does not know what will happen then, but he will use any means to save his child.
“I don’t know what I will need, and I will do whatever it takes,” he said.
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