Latest news with #TPN
Time of India
a day ago
- Health
- Time of India
What is short bowel syndrome? How serious is it?
When 4-year-old S.G.V. appeared at a recent press conference in Los Angeles, she seemed like any other preschooler—quietly coloring and playing cards. But the backpack strapped to her shoulders told a different story. Inside it was the equipment delivering life-sustaining nutrition directly into her bloodstream, a treatment known as Total Parenteral Nutrition (TPN). S.G.V. lives with short bowel syndrome (SBS), a rare but serious condition that makes her unable to absorb nutrients from food. Without the nightly intravenous nutrition she receives in the U.S., doctors say she would not survive more than a few days. Her case recently drew national attention because of a change to her family's immigration status, which threatens to interrupt the care that keeps her alive. But beyond the legal battle is a far more urgent medical issue: What exactly is short bowel syndrome, and why is it so dangerous? What is Short Bowel Syndrome? According to the Mayo Clinic, short bowel syndrome is a condition in which the body cannot absorb enough nutrients from the food you eat because part of the small intestine is missing or damaged. The small intestine is where most nutrients are absorbed during digestion. When a large portion of it is removed or doesn't function properly, the body can't get enough protein, fat, carbohydrates, vitamins, or minerals to survive. SBS can happen in two ways: A person is born with part of the intestine missing or damaged. A person has to have large sections of the small intestine surgically removed due to conditions like Crohn's disease, cancer, trauma, or blood clots in the intestinal arteries. How does it affect the body? The Cleveland Clinic explains that while the body has some ability to adapt to small intestinal changes, losing too much—especially the jejunum or ileum—makes it very difficult to absorb nutrients. In many cases, the ileum (the final portion of the small intestine) can take over some of the roles of the missing segments. But when too much of the intestine is gone, even that adaptation isn't enough. In infants like S.G.V., this can lead to severe malnutrition, dehydration, and growth failure. Symptoms in children Signs of short bowel syndrome in children include: Chronic diarrhea or loose, watery stool Bloating and excessive gas Fatigue Foul-smelling stool Poor weight gain or failure to grow These symptoms come from the body's inability to digest and absorb essential nutrients, fluids, and electrolytes. How is Short Bowel Syndrome treated? Dietary Changes Children with milder forms of SBS may benefit from frequent small meals, high-calorie foods, and supplements of vitamins and minerals. They may need to avoid certain foods that are hard to digest, such as those high in fat, sugar, or fiber. However, in more severe cases—like S.G.V.'s—diet alone is not enough. Total Parenteral Nutrition (TPN) TPN is a method of delivering nutrients directly into the bloodstream through a special IV catheter, bypassing the digestive system entirely. The fluid contains carbohydrates, protein, fats, electrolytes, and vitamins. This is the primary treatment for children with severe SBS. It is often given overnight for 12–16 hours to allow children to be mobile during the day. As in S.G.V.'s case, some children use portable TPN backpacks, which allow them to attend school or go outside while still receiving nutrition. 'If her treatment is interrupted, she will die within days,' said Gina Amato, the family's attorney, to NBC News. However, long-term use of total parenteral nutrition (TPN) can lead to several serious complications. These include bacterial infections, issues with the intravenous catheter, and blood clots. Over time, TPN may also reduce the body's ability to absorb calcium into the bones, increasing the risk of bone weakening. It can contribute to gallbladder disease, kidney damage, and liver problems. In severe cases, these complications may progress to kidney or liver failure. Enteral feeding (Tube Feeding) Some children also need a feeding tube inserted into the stomach or intestines to get liquid nutrition. This may be used in combination with TPN to encourage the intestines to function as much as possible. Complications of Short Bowel Syndrome Because the body can't absorb nutrients the usual way, SBS comes with serious health risks: Malnutrition and vitamin deficiencies Electrolyte imbalance (sodium, potassium, magnesium) Dehydration Gallstones Kidney stones Liver disease from long-term TPN Infections related to central IV lines In infants, complications like cholestasis (bile backup in the liver) and intestinal failure-associated liver disease are particularly dangerous. One step to a healthier you—join Times Health+ Yoga and feel the change
Yahoo
2 days ago
- General
- Yahoo
4-year-old girl's life-saving treatment at risk after family's legal immigration status is revoked
A Mexican girl is at risk of losing access to the life-saving treatment she has been receiving in Los Angeles after her family's legal immigration status was abruptly revoked. Her family is now fighting to have their status reinstated. 'If they deport us and take away my daughter's access to her specialized care, she will die,' Deysi Vargas, the girl's mother, said Wednesday in her native Spanish during a news conference. Her 4-year-old daughter, who is being identified only by the initials S.G.V., was born with a defect in her small intestines known as short bowel syndrome. The condition does not allow her body to absorb nutrients from regular food. Instead, the girl receives all the nutrients she needs intravenously through a treatment known as Total Parenteral Nutrition, or TPN. "The doctors that are treating her have stated very clearly that if her treatment is interrupted, she will die within days," Gina Amato, an attorney for the family, told NBC News. "This is a classic example where deportation would equal death for this child. It is a very desperate situation.' To prevent malnutrition, S.G.V. receives her TPN treatment each night at home for at least 14 hours, the mother and her attorneys said. During the day, when the girl goes to pre-school or accompanies her mother to the supermarket, S.G.V. wears a portable version of the treatment in a backpack. At least four times a day, Vargas spends one hour connecting her daughter to gastric tubes that attach to the backpack containing the nutrients she needs. The company that manufactures the equipment that delivers the intravenous nutrition the girl needs does "not allow the equipment to travel outside the United States," Amato said at the news conference, adding that few places outside the U.S. can safely and effectively administer this treatment. Before coming to the United States nearly two years ago, S.G.V. 'was in really terrible shape and was having a very difficult time surviving,' Amato said. The girl had been receiving medical care in Mexico, spending many hours in a hospital bed receiving her nutrients intravenously, according to Amato and Vargas. S.G.V. was "not growing or getting any better," Vargas said. Desperate to get better medical care for their daughter, Vargas and her partner used the now-defunct CBP One app on July 2023 to legally enter the U.S. through the southern border. The family was then granted humanitarian parole for the purpose of seeking medical treatment for S.G.V. The girl was quickly taken to a hospital in San Diego upon their arrival because she was in such poor health, the family and their attorneys said. A year later, she was referred to the Children's Hospital in Los Angeles, which has one of the nation's best gastroenterology programs. Doctors there have been caring for S.G.V. for the past year, also monitoring the TPN treatment she receives. "Now, with the help my daughter receives in the United States, my daughter has the opportunity to leave the hospital, see the world, and live like a child her age," Vargas said. S.G.V. was at the news conference with her TPN backpack. She spent most of the time playing cards and making some arts and crafts to show how the treatment has helped improve her quality of life. According to the family's legal team, the family's humanitarian parole was set to expire at the end of July and Vargas was fighting to get it extended. But last month, the family received a notice via email from the Department of Homeland Security terminating their parole and work authorization. "If you do not depart the United States immediately you will be subject to potential law enforcement actions that will result in your removal from the United States — unless you have otherwise obtained a lawful basis to remain here," the notice, which was obtained by NBC News, reads. 'Clearly they did not give individualized consideration to this case, because had they done so,' Amato told NBC News, 'we believe that they would not have made this decision given the really poor condition of this child.' The notice also said, "DHS encourages you to leave immediately on your own," using the CBP Home mobile app, which has a self-deportation feature. The notice did not state a reason for revoking the family's parole other than DHS "exercising its discretion." According to attorneys at Public Counsel, the legal firm representing the family, no one in the family has any convictions. But the girl's father, who is not married to Vargas, has a pending charge stemming from "a misunderstanding at the San Diego hospital when he raised his voice" when discussing his daughter's care in an area "where he did not understand he could not be loud." Attorneys believe the charge will likely "be dismissed because he's complying with the anger management classes the courts requested of him," they said. "This does not influence the legality of Deysi's case." Believing the DHS notice was perhaps sent by mistake, attorneys for the family wrote a letter to federal immigration authorities on May 9. "They have not violated the terms of their parole," the letter, which was obtained by NBC News, reads. "We believe this notice was issued in error. Please correct this error." Still, the family continued receiving notices about their parole's termination, Amato said during the press conference. So, they filed a new application for humanitarian parole through the U.S. Citizenship and Immigration Services. The agency did not respond to a request for comment. A senior DHS official insisted to NBC News via email that reports about the family "actively being deported are FALSE. This family applied with USCIS for humanitarian parole on May 14, 2025, and the application is still being considered.' In the meantime, 'the family is very much in limbo, and they're terrified,' Amato said. 'They're no longer in status and they're no longer authorized to work in the U.S. So, they face many fears.' This article was originally published on
NBC News
2 days ago
- Health
- NBC News
4-year-old girl's life-saving treatment at risk after family's legal immigration status is revoked
A Mexican girl is at risk of losing access to the life-saving treatment she has been receiving in Los Angeles after her family's legal immigration status was abruptly revoked. Her family is now fighting to have their status reinstated. 'If they deport us and take away my daughter's access to her specialized care, she will die,' Deysi Vargas, the girl's mother, said Wednesday in her native Spanish during a news conference. Her 4-year-old daughter, who is being identified only by the initials S.G.V., was born with a defect in her small intestines known as short bowel syndrome. The condition does not allow her body to absorb nutrients from regular food. Instead, the girl receives all the nutrients she needs intravenously through a treatment known as Total Parenteral Nutrition, or TPN. "The doctors that are treating her have stated very clearly that if her treatment is interrupted, she will die within days," Gina Amato, an attorney for the family, told NBC News. "This is a classic example where deportation would equal death for this child. It is a very desperate situation.' To prevent malnutrition, S.G.V. receives her TPN treatment each night at home for at least 14 hours, the mother and her attorneys said. During the day, when the girl goes to pre-school or accompanies her mother to the supermarket, S.G.V. wears a portable version of the treatment in a backpack. At least four times a day, Vargas spends one hour connecting her daughter to gastric tubes that attach to the backpack containing the nutrients she needs. The company that manufactures the equipment that delivers the intravenous nutrition the girl needs does "not allow the equipment to travel outside the United States," Amato said at the news conference, adding that few places outside the U.S. can safely and effectively administer this treatment. Before coming to the United States nearly two years ago, S.G.V. 'was in really terrible shape and was having a very difficult time surviving,' Amato said. The girl had been receiving medical care in Mexico, spending many hours in a hospital bed receiving her nutrients intravenously, according to Amato and Vargas. S.G.V. was "not growing or getting any better," Vargas said. Desperate to get better medical care for their daughter, Vargas and her partner used the now-defunct CBP One app on July 2023 to legally enter the U.S. through the southern border. The family was then granted humanitarian parole for the purpose of seeking medical treatment for S.G.V. The girl was quickly taken to a hospital in San Diego upon their arrival because she was in such poor health, the family and their attorneys said. A year later, she was referred to the Children's Hospital in Los Angeles, which has one of the nation's best gastroenterology programs. Doctors there have been caring for S.G.V. for the past year, also monitoring the TPN treatment she receives. "Now, with the help my daughter receives in the United States, my daughter has the opportunity to leave the hospital, see the world, and live like a child her age," Vargas said. S.G.V. was at the news conference with her TPN backpack. She spent most of the time playing cards and making some arts and crafts to show how the treatment has helped improve her quality of life. According to the family's legal team, the family's humanitarian parole was set to expire at the end of July and Vargas was fighting to get it extended. But last month, the family received a notice via email from the Department of Homeland Security terminating their parole and work authorization. "If you do not depart the United States immediately you will be subject to potential law enforcement actions that will result in your removal from the United States — unless you have otherwise obtained a lawful basis to remain here," the notice, which was obtained by NBC News, reads. 'Clearly they did not give individualized consideration to this case, because had they done so,' Amato told NBC News, 'we believe that they would not have made this decision given the really poor condition of this child.' The notice also said, "DHS encourages you to leave immediately on your own," using the CBP Home mobile app, which has a self-deportation feature. The notice did not state a reason for revoking the family's parole other than DHS "exercising its discretion." According to attorneys at Public Counsel, the legal firm representing the family, no one in the family has any convictions. But the girl's father, who is not married to Vargas, has a pending charge stemming from "a misunderstanding at the San Diego hospital when he raised his voice" when discussing his daughter's care in an area "where he did not understand he could not be loud." Attorneys believe the charge will likely "be dismissed because he's complying with the anger management classes the courts requested of him," they said. "This does not influence the legality of Deysi's case." Believing the DHS notice was perhaps sent by mistake, attorneys for the family wrote a letter to federal immigration authorities on May 9. "They have not violated the terms of their parole," the letter, which was obtained by NBC News, reads. "We believe this notice was issued in error. Please correct this error." Still, the family continued receiving notices about their parole's termination, Amato said during the press conference. So, they filed a new application for humanitarian parole through the U.S. Citizenship and Immigration Services. The agency did not respond to a request for comment. A senior DHS official insisted to NBC News via email that reports about the family "actively being deported are FALSE. This family applied with USCIS for humanitarian parole on May 14, 2025, and the application is still being considered.' In the meantime, 'the family is very much in limbo, and they're terrified,' Amato said. 'They're no longer in status and they're no longer authorized to work in the U.S. So, they face many fears.'
Miami Herald
3 days ago
- Health
- Miami Herald
4-year-old girl facing deportation could die within days of losing medical care
Deysi Vargas' daughter was nearly 2 1/2 when she took her first steps. The girl was a year delayed because she had spent most of her short life in a hospital in Playa del Carmen, Mexico, tethered to feeding tubes 24 hours a day. She has short bowel syndrome, a rare condition that prevents her body from completely absorbing the nutrients of regular food. Vargas and her husband were desperate to get their daughter, whom the Los Angeles Times is identifying by her initials, S.G.V., better medical care. In 2023, they received temporary humanitarian permission to enter the U.S. legally through Tijuana. Now in Bakersfield, California, the family received notice last month that their legal status had been terminated. The letter warned them: "It is in your best interest to avoid deportation and leave the United States of your own accord." But doing so would put S.G.V., now a bubbly 4-year-old, at immediate risk of death. "This is a textbook example of medical need," said the family's attorney, Rebecca Brown, of the pro bono legal firm Public Counsel. "This child will die and there's no sense for that to happen. It would just be a cruel sacrifice." A spokesperson for U.S. Citizenship and Immigration Services declined to comment. Children's Hospital Los Angeles, where the girl regularly receives treatment, declined to comment. But in a letter requested by the family, Dr. John Arsenault of CHLA wrote that he sees the girl every six weeks. If there is an interruption in her daily nutrition system, called Total Parenteral Nutrition (TPN), the doctor wrote, "this could be fatal within a matter of days." "As such, patients on home TPN are not allowed to leave the country because the infrastructure to provide TPN or provide immediate intervention if there is a problem with IV access depends on our program's utilization of U.S.-based healthcare resources and does not transfer across borders," Arsenault wrote. Vargas, 28, is from the Mexican state of Oaxaca; her husband, 34, is from Colombia. They met in Cancun, where they were working. Just before S.G.V. was born, the couple moved to nearby Playa del Carmen so her husband could work as an Uber driver. The girl was born a month premature and quickly taken to intensive care. After doctors discovered her condition, she underwent six surgeries to fix an intestinal blockage. But Vargas said the doctors cut out too much, and the girl was left with short bowels. She experienced repeated blood infections, including one that nearly killed her. The girl's weight fluctuated severely. One month, she would look emaciated, her tiny limbs and bulging stomach incongruous with the family's relative access to resources. Another month, she was as round-cheeked as any other baby. When S.G.V. was 7 months old, a doctor suggested that the family relocate to Mexico City, where pediatric care for short bowel syndrome was the best in the country. But although her condition initially improved, the blood infections continued. Unable to work, Vargas spent all day, every day, at the hospital with her daughter. Some days, she said, nurses would mistakenly administer the wrong medication to S.G.V. Other days, Vargas would arrive to find that her daughter had thrown up on herself overnight and no one had cleaned her up. Vargas tried to keep a watchful eye over her daughter. Even so, she said a nurse once mistakenly sped up S.G.V.'s nutrition system, causing her to quickly pee it out. The girl became dehydrated and her glucose levels skyrocketed before doctors whisked her to intensive care, where her condition stabilized. Vargas had read about children similar to her daughter going on to have normal lives in other countries. In Mexico, her daughter was being kept alive - but at 2, her condition had not improved. So when Vargas learned that the Biden administration had begun offering migrants appointments with border agents through a phone application called CBP One, she signed up. Those let in received two-year protection from deportation and work permits. With the appointment set for July 31, 2023, Vargas and her family set out for Tijuana two days earlier. She carefully carried her daughter out of the hospital, her nutrition bags still connected intravenously. Her husband told agents that he had once been kidnapped by cartel members in Mexico who extorted money and threatened to kill him. They also looked at the girl, whose vulnerable condition was obvious. "God knew she needed better treatment," Vargas said. "When we got to the entrance, they saw her and asked us if we needed medical help." By that afternoon, the family had been whisked to Rady Children's Hospital-San Diego. S.G.V. quickly improved. Although she once was hooked up 24 hours a day to the feeding system that delivered nutrients directly into the bloodstream, doctors began weaning her off as her intestines got stronger. A year later, doctors referred her to Children's Hospital Los Angeles, which has one of the top-ranked gastroenterology programs in the country. Both of her parents worked, holding down odd jobs, and by September 2024, the family had settled in Bakersfield and S.G.V. was discharged from the hospital. For the first time, S.G.V. experienced the outside world. At Walmart, her eyes widened from the shopping cart and she and her mom strolled the aisles. "It was incredible," Vargas said. "I had waited so long for doctors to tell me, 'Ma'am, your daughter is OK now. She can go home.'" Now, the girl spends 14 hours each night hooked up to the intravenous feeding system. She wears a backpack to take it on the go. Four times a day, for an hour, her mom administers a different type of nutrition that goes straight into her stomach through a gastric tube. When the girl goes to preschool, she takes a larger backpack containing the milky fluid, and the school nurse administers her noon feeding. Before S.G.V. takes a shower, Vargas unplugs her IV tubes, flushes them with saline and tapes a plastic sheet over her chest to keep water from getting in and infecting the area. On a recent morning, Vargas dressed the girl in pink leggings, a Hello Kitty T-shirt and black Puma sneakers. As they left hand-in-hand for preschool, S.G.V.'s curly black hair was still wet and the adult-size backpack dangled behind her knees as she walked. S.G.V.'s care is covered through Medi-Cal. But life in the U.S. isn't cheap. Their modest living room contains little more than a hot plate on a folding table, a mini-fridge, a single chair and an IV bag stand. With no full kitchen, Vargas mostly makes sandwiches or soups. The fridge is filled with S.G.V.'s nutrition packs. Vargas recently found steady work cleaning a restaurant. Finally, she thought, the family was achieving a sense of stability. Then in April she received the notice from immigration authorities. This month, she received a notice terminating her employment authorization. Vargas said she and her husband sometimes eat just once a day after paying rent and utilities, as well as for diapers and other necessities. Her husband is currently unemployed because of an injury, and she fears that losing her income could leave them homeless. The thought of being forced by immigration agents to return to Mexico terrifies Vargas. "I know the treatment they have there for her is not adequate, because we already lived it," she said. "Those were bad times. Here she is living the most normal life possible." If not for her daughter's medical condition, Vargas said, they probably would still be in Mexico. They want to stay only for as long as the girl needs treatment. Exactly how long that could be is unclear, but the couple are hopeful that their child's condition will improve enough that she stops requiring supplemental nutrition. Brown, their lawyer, submitted a petition for a continuation of their temporary humanitarian legal status based on S.G.V.'s medical condition. She believes the family's legal status was prematurely terminated by mistake. President Donald Trump lambasted Biden over his broad expansion of programs allowing humanitarian entry, known as parole. On his first day in office, Trump issued an executive order to ensure that the discretionary authority be "exercised on only a case-by-case basis" for urgent humanitarian reasons or a significant public benefit. "This is the intended purpose - to help the most vulnerable who need attention here," Brown said. "We can avoid having harmed the child and the family." Although Trump said on the campaign trail that he would target criminals for deportation, his administration quickly began revoking the legal status of immigrants who have no criminal history. The Trump administration has stripped humanitarian protections from hundreds of thousands of immigrants who entered the U.S. under various Biden-era programs. Thousands of people who similarly entered the country using the CBP One app received notices from the federal government around the same time Vargas did, ordering them to leave voluntarily or face criminal prosecution and other legal actions. The same phone app that Vargas used to enter the country has since been turned into CBP Home, to help immigrants such as her self-deport. If not, the notice says, "the federal government will find you." ----------- -Times staff photographer Myung J. Chun in Bakersfield contributed to this report. Copyright (C) 2025, Tribune Content Agency, LLC. Portions copyrighted by the respective providers.
Yahoo
3 days ago
- General
- Yahoo
Trump has ordered a critically ill four-year-old Mexican girl to leave the country. She could die within days, experts say
A critically ill Mexican girl who could die within days if her treatment is paused has been ordered by the Trump administration to leave the U.S., according to her family and doctor. Deysi Vargas's 4-year-old daughter, named only as Sofia in a GoFundMe page, urgently required better medical care for a life-threatening condition and was granted temporary humanitarian permission to enter the U.S. from her home country of Mexico in 2023, The Los Angeles Times reports. Sofia has short bowel syndrome, a rare condition that stops her from absorbing nutrients in food. When she was born in Playa del Carmen, Mexico, she had to be attached to feeding tubes 24 hours a day. Since moving to the U.S., her condition has significantly improved, but she still requires treatment every day. Now the Trump administration has ordered Sofia's deportation, leaving her at risk of death, an attorney representing the family said. 'This is a textbook example of medical need,' Rebecca Brown of the pro bono firm Public Counsel told the paper. 'This child will die and there's no sense for that to happen. It would just be a cruel sacrifice.' The family is currently living in Bakersfield, California, just over 100 miles north of Los Angeles. The threat to Sofia's life was confirmed by Dr. John Arsenault of the Children's Hospital Los Angeles, where she receives regular treatment every six weeks. Arsenault said in a letter seen by The Los Angeles Times that if there is an interruption to administering nutrition to her system, 'it could be fatal within a matter of days.' The doctor added that patients who receive the treatment, called Total Parenteral Nutrition, at home 'are not allowed to leave the country.' 'The infrastructure to provide TPN or provide immediate intervention if there is a problem with IV access depends on our program's utilization of U.S.-based healthcare resources and does not transfer across borders,' Arsenault explained in the letter. The Independent has contacted the U.S. Citizenship and Immigration Services for comment. Sofia was reportedly born one month premature and had to undergo six surgeries due to an intestinal blockage, as medics struggled to get the condition under control in Mexico. During one surgery, Vargas, 28, told the newspaper that doctors cut out too much, leaving Sofia with short bowels. One blood infection she suffered as a result nearly killed her. While she was being kept alive in Mexico, her condition was no better by the age of two and Vargas knew the family would have to move to get her better care. Vargas signed up to the Biden administration's CBP One app to book an appointment with border agents in Tijuana to receive two-year protection from deportation. The app is now used by the Trump administration to notify migrants to self-deport or face the consequences. At the appointment on July 31, 2023, agents could tell that Sofia was seriously unwell just by taking one look at her. 'God knew she needed better treatment,' Vargas told The Los Angeles Times. 'When we got to the entrance, they saw her and asked us if we needed medical help.' That same day, the family was taken to Rady Children's Hospital-San Diego and her condition improved quickly. A year later, Sofia was referred to the Children's Hospital Los Angeles, which has one of the highest-ranked programs for gastroenterology in the U.S. Under their care, by September 2024, Sofia was discharged and could receive treatment in the comfort of her home. Meanwhile, her parents were working hard to hold down odd jobs in Bakersfield. 'It was incredible,' Vargas, who found a steady job as a cleaner at a restaurant, told the outlet. 'I had waited so long for doctors to tell me, 'Ma'am, your daughter is OK now. She can go home.'' Sofia's care is still gruelling. She must still spend 14 hours a night hooked up to the intravenous feeding system and Vargas also has to administer different medication that goes into her stomach through a gastric tube four times a day. At preschool, a school nurse has to administer nutrition daily. As things were beginning to look up, the notice from immigration arrived, swiftly followed by a notice terminating her employment authorization. Their attorney believes the family's legal status was terminated by mistake and has submitted a petition for a continuation of temporary humanitarian legal status because of Sofia's medical condition. 'This is the intended purpose — to help the most vulnerable who need attention here,' Brown said. 'We can avoid having harmed the child and the family.' Vargas added that they only intend to stay for as long as Sofia requires treatment, which is unclear.
