Transplantation of an 11-year-old American girl at risk due to bureaucracy

Nicolaus Espinosa’s wishes for his 11-year-old daughter Julia are as simple as they are deep: so that she can survive and perhaps one day be able to eat normally.

And he could, if he got three organs from the transplant … and the US immigration system doesn’t stop him.

In a case that reflects the system’s significant and often heartbreaking flaws, Espinosa faces not only the country’s complex healthcare complex and costly maze, but also an immigration system that Congress has failed to reform for decades.

That chaotic reality threatens the life of an American girl.

Julia was born in Miami when her parents were studying in college on a student visa. He was born with a congenital defect called valvulaus, a crooked small intestine, and doctors removed most of his limbs to save him as a child.

Ever being able to eat normally, Julia has survived a daily infusion of nutritional care, which she receives through an IV in her chest, Espinosa explained.

It is extremely expensive and special care that, according to Espinosa, Julia will not be able to get to 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 is designed for the human body and the process has damaged its organs.

Julia is on the list for small bowel transplants and her failed liver and pancreas transplants.

Her daughter’s health is already challenging, but Espinosa and his wife, Maria Senz, face an additional challenge: an ongoing battle with immigration authorities to stay and work legally in the country.

For the second time in three years, Espinosa is facing the possibility of losing her work permit, which will cost her not only her job as a technology support provider at a software company, but also her health insurance. Without coverage, your daughter will lose her eligibility for replacement.

“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.”

Espinosa was aware of his precarious position and acted quickly to renew his immigration status, known as the suspended medical care. This is a department where the government suspends an exile so that the person can deal with a serious illness.

Those who have delayed work can also apply for a work permit. Espinosa requested that his suspended action be renewed in November, although his current extension lasted until the end of July.

However, he has not heard from immigration until recently, and the approval came after consultation with the agency by members of Congress and a reporter.

Even so, owning one is still beyond the reach of the average person. Espinosa’s application for a new work permit has not yet been approved. If the new permit does not arrive on time, you may still lose your job and insurance by the end of July.

Julia survives by receiving a daily dose of nutrients through an IV in her chest. His father, Nicolas Espinosa, said he would not be able to take such special care in Ecuador, where the family came from. (Nicolas Espinosa)

Julia’s family did everything in their power to help the girl. What they can’t control is the immigration bureaucracy. (Nicolas Espinosa)

A spokesman for Seattle Children’s Hospital said they would work with Espinosas when Julia’s insurance expires, although her place on the transplant list could be suspended, leaving Espinosa with an alternative to Medicaid.

Even with the current uncertainty – a gap in coverage could prove catastrophic – Espinosa said he was more optimistic than a week ago, as work permits are usually granted with suspended action status.

And the uncertainty is that Espinosa has become accustomed to a country where there seems to be no reasonable way to help immigrant families facing a health crisis.

“The problem is there is no legal framework,” Espinosa said. “The delayed move is not a visa, it’s just a government decision not to deport.”

If doctors could keep Julia alive, the family would face the same dire possibility of losing legal status within two years of this new stay.

It is not clear how many more families face similar situations. Katie Tichachek, a spokeswoman for the Citizenship Agency, did not provide the data, and no statistics are publicly available.

Data obtained by WBUR after requests from Massachusetts lawmakers in 2020 revealed that in 2018, there were more than 700 requests for action suspended due to treatment. Less than half have been approved.

It was then that Julia faced the first threat of her life related to immigration. At the time, the Trump administration suspended all suspended medical activities. Faced with lawsuits and public outcry, the administration remained silent, but Espinosa could not function legally for a year and a half.

However, not everything was sad. The family manages Julia’s condition so that she can go to school, travel and do whatever she likes.

“We tried to survive 100%, because so far we were lucky to have Julia,” Espinosa said. “We have always been told he could not do it. It was basically the first month of his life, then the first year and then two years and then the next period. “

They have overcome all adversity by doing everything in their power. What they can’t control is the federal bureaucracy.

Even choosing some of the things that are under your control, such as giving Julia the best opportunity, can be problematic. Espinosa said there could be higher availability of organs in some more states and regions of the country. As long as Julia is stable, it makes more sense to stay where they are. If Julia’s liver continues to deteriorate, it will be different.

Mahsa Khanbabai, a board member with the American Immigration Lawyers Association, said the problem Espinosa and others face is that citizenship and immigration services are overwhelmed, bureaucratic and less funded, not dependent on tasks.

“It’s a very good example of a broken system,” Khanbabai said. “This can easily be fixed through immigration reform.”

Tichachek said in a statement that the agency did not comment on specific cases, but added that it was “committed to promoting policies and procedures that protect the most vulnerable” and was working hard to rebuild trust with immigrants and expand access to services. Important service.

Espinosa knows full well that even with media attention, legal aid and the help of lawmakers, his family can fly under the radar. He did not know what would happen then, but as he said, “I will do whatever it takes to save my daughter.”

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