Deysi Vargas’ daughter was almost 2½ when she took the first step.
The girl spent most of her short life at a hospital in Playa del Carmen, Mexico, and was delayed a year as she fed and raised tubes 24 hours a day. She suffers from short bowel syndrome. This is a rare condition that prevents the body from absorbing all the nutrients of normal food.
Vargas and her husband were desperate to take their daughter. In 2023, they received temporary humanitarian permission to legally enter the United States through Tijuana.
Now, in Bakersfield, the family has received notification last month that their legal status has ended. The letter warned them: “It is your greatest interest to avoid deportation and leave the United States from your own agreement.”
But doing so now the cheerful 4-year-old SGV is at risk of death.
“This is an example of a medical needs textbook,” said Rebecca Brown, a family lawyer, and public adviser at the Pro Bono Law Company. “This child dies and there’s no sense that it will happen. It’s just a cruel victim.”
A spokesman for US Citizenship and Immigration Services declined to comment.
SGV medicines are stored in a small refrigerator.
Children’s Hospital Los Angeles, where the girl is regularly treated, declined to comment. However, in a letter requested by the family, Dr. John Arsenault of Chla writes that he sees girls every six weeks.
If there is a disruption in her daily nutrition system called Total Ritereral Nutrition (TPN), the doctor wrote, “This could be fatal within a few days.”
“So, if there is an issue with IV access, patients with home TPNs are not permitted to leave the country because the infrastructure provides TPNs or the infrastructure that provides immediate intervention depends on the use of US-based healthcare resources and does not move across borders,” writes Arsenault.
Vargas, 28, is from Oaxaca, Mexico. Her husband, 34, is from Colombia. They met in Cancun, where they worked. Just before the SGV was born, the couple moved to nearby Playa del Carmen, where their husbands could work as Uber drivers.
The girl was born early, a month earlier and was immediately taken to intensive care. After the doctors discovered her condition, she underwent six surgeries to correct an obstruction in the intestine. However, Vargas said the doctor had cut out too much and the girl had a short intestine left. She experienced repeated blood infections, including those that nearly killed her.
The girl’s weight fluctuated quite a bit. One month she was weakened, her small limbs and bulging stomach seemed to be incongruous with relative access to family resources. Another month she had round cheeks, just like the other babies.
When SGV was seven months old, doctors suggested that the family be relocated to Mexico City. Here, pediatric care for short bowel syndrome was the best in the country. However, although her condition initially improved, the blood infection continued.
Unable to work, Vargas spent every day at the hospital with his daughter. One day, the nurse accidentally administered the wrong medicine to SGV, and on other days Vargas arrived and said he realized that his daughter was thrown at him overnight and no one had cleaned her.
As part of her daily routine, Deysi Vargas performs saline solution through her daughter’s intravenous line.
Vargas tried to give his daughter a careful look. Still, she said the nurse once accidentally spiked the nutritional system of SGV, causing him to peek at it immediately. The girl became dehydrated, her glucose levels spiked, and the doctors frothed her into intensive care, where her condition stabilized.
SGV as a baby taken in Mexico before treatment for short bowel syndrome.
(Deysi Vargas)
Vargas was reading about children who resemble daughters living normal lives in other countries. In Mexico, her daughter was alive, but at 2 o’clock her condition had not improved.
So when Vargas learned that the Biden administration had begun offering immigration appointments to border agents through a telephone application called CBP One, she signed up. People received two years of protection from deportation and work permits.
With appointments set for July 31, 2023, Vargas and her family left for Tijuana two days ago. She carefully transported her daughter out of the hospital. Her nutritional bag is still connected intravenously.
Her husband told the agent that he had been invited to a member of the Mexican cartel in the past. They also saw the girl whose vulnerability was apparent.
“God knew she needed better treatment,” Vargas said. “When we got to the entrance, they looked at her and asked us if we needed medical assistance.”
By that afternoon, the family had been whisked up in the Rady Children’s Hospital-San Diego.
The SGV was quickly improved. She once connected to a feeding system that delivered nutrients directly to the bloodstream 24 hours a day, but doctors began to leave her as her gut got stronger.
The Trump administration revoked the humanitarian parole of a family that he received in 2023 to treat a short bowel syndrome in a four-year-old girl. The doctor says she can die within a few days without treatment.
A year later, doctors referred her to Los Angeles Children’s Hospital. Los Angeles has one of the top-ranked gastroenterology programs in the country.
Her parents both held back their strange jobs, and by September 2024 the family had settled in Bakersfield and SGV had been discharged from the hospital.
This was SGV’s first experience in the outside world. At Walmart, her eyes widened from the shopping cart, and she and her mom took a walk down the aisle.
“It was incredible,” Vargas said. “I’ve been waiting so long for the doctor to tell me, ‘Your daughter is fine now. She can go home.”
Now, the girl connects to the intravenous feeding system for 14 hours each night. She wears a backpack and takes it on the go.
Four times a day, her mom manages another type of nutrition that goes straight into the stomach through the stomach tube. When the girl goes to kindergarten, she takes a larger backpack containing milky liquid, and the school nurses manage the noon feeding.
Before the SGVs can shower, Vargas remove the IV tubes, wash them off with salted water, and tape a plastic sheet on their chest to prevent water from getting in and infecting the area.
On a recent morning, Vargas dressed in pink leggings, a Hello Kitty T-shirt and black Pumas sneakers in pink leggings. They held hands for kindergarten, SGV’s curly black hair was still wet, and an adult-sized backpack was hanging behind her knees while she walked.
SGV care is covered through Medi-Cal. However, living in the US is not cheap.
Their understated living room is nothing more than a folding table, minifridge, a single chair and a hot plate with an IV bag stand. There is no full kitchen, and Vargas mainly makes sandwiches and soups. The fridge is full of SGV nutritional packs.
Vargas recently found a stable task of cleaning the restaurant. Finally, she thought her family was achieving stability.
He then received a notification from immigration authorities in April. This month she received a notice to end her employment permit.
Vargas said she and her husband sometimes eat not only once a day after paying rent or utilities, but also for diapers and other essentials. Her husband is currently unemployed due to injuries and she fears that losing income could make them homeless.
The idea of immigration agents being forced to return to Mexico is fearful of Vargas.
“We were already alive so we know that the treatment they have there for her is not enough,” she said. “These were bad times. Here she is living the most normal life possible.”
Without her daughter’s condition, Vargas said, they would probably be in Mexico. They want to stay as long as the girls need treatment. It is unclear how long it will be, but couples hope that the child’s condition will improve sufficiently to stop the need for supplementary nutrition.
Their lawyer, Brown, filed a petition for the continuation of temporary humanitarian legal status based on SGV’s medical condition. She believes that the family’s legal status was accidentally ended.
President Trump has denounced Biden for the widespread expansion of the program that allows humanitarian entry, known as parole. On his first day in office, Trump issued an executive order to ensure that discretion was “exerted only on a case-by-case basis” for emergency humanitarian reasons or serious public interest.
Deysi Vargas and her daughter SGV take about 15 minutes to their children’s kindergarten.
“This is the intended purpose: to help the most vulnerable people who need attention here,” Brown said. “We can avoid harming our children and our families.”
Trump said in his campaign trajectory that he would target criminals for deportation, but his administration soon began revoking the legal status of immigrants without criminal history.
The Trump administration stripped humanitarian protections from hundreds of thousands of migrants who entered the United States under various Biden-era programs. Thousands of people who entered the country using the CBP One app similarly received notifications from the federal government at the same time that Vargas did and ordered them to either voluntarily leave or face criminal prosecution or other legal action.
The same phone app that Vargas used to enter the country has since been transformed into a CBP home to support immigration such as her self-declaration. Otherwise, the notification states, “The federal government will find you.”
Myung J. Chun, a photographer on the Times staff at Bakersfield, contributed to this report.
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