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:
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 childrenSigns of short bowel syndrome in children include:
How is Short Bowel Syndrome treated? Dietary ChangesChildren 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 SyndromeBecause the body can’t absorb nutrients the usual way, SBS comes with serious health risks:
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.
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 childrenSigns 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
How is Short Bowel Syndrome treated? Dietary ChangesChildren 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 SyndromeBecause 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
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