Meet a little girl with ultra-short bowel syndrome and see how far she’s come, thanks to specialized care and a devoted mother.
When Rosie Regalado-Bravo’s mother, Jasmine Bravo, recently tried to give her daughter the kid-friendly version of Mexican pozole without the chili peppers in it, Rosie demanded the spicy, habanero-filled version instead. While this might be a little surprising if Rosie were a typical preschooler, the moment was, in fact, very special. When Rosie was born, her family worried that she might never eat solid food at all. Because of her extreme short bowel syndrome (SBS), they also were concerned that her growth would be stunted or that she might face developmental delays. Instead, Rosie has grown into a sassy, smart, tall toddler with a big head of curly hair and an even bigger appetite.
Rosie was born when Jasmine was just 24 weeks pregnant. She weighed 1 pound, 12 ounces, and had a long stay in the Neonatal Intensive Care Unit (NICU) at Stanford Medicine Children’s Health. When she was a few weeks old, she developed a serious condition that’s common in micro-preemies called necrotizing enterocolitis (NEC). The condition inflames and kills parts of the intestine tissue. Her NEC progressed to life-threatening sepsis. “Rosie was dying, and we had an emergency baptism,” remembers Jasmine. “Every day was hard—we just didn’t know what would happen.”
Rosie needed surgery right away to remove the damaged intestine and to save her life. As part of the surgery, she had a procedure that connected part of her remaining intestine to a surgically created opening in her belly (called an ostomy). An ostomy bag allowed stool to bypass the damaged intestine and exit her body through this opening. This way, her remaining intestine could rest and start to heal.
A dramatic case
Thankfully, the surgery was a success. But it was just the beginning of Rosie’s journey. Full-term newborns’ small intestines are about 300 cm long, and their large intestines are about 50 cm. After her surgeries, Rosie had only half of her large intestine and just 10 cm of small intestine—constituting ultra-short bowel syndrome. This condition leads to chronic diarrhea and hampers nutrient absorption because food moves too quickly through the shortened intestines.
SBS requires highly specialized medical, surgical, and nutritional care, which all come together at Stanford Medicine Children’s Health’s Intestinal Rehabilitation and Nutrition Support program. One of the few pediatric intestinal rehabilitation programs on the West Coast, it includes dedicated surgeons, physicians, and nurses and an office assistant, all focused on the care of children with intestinal failure. Shweta Namjoshi, MD, medical director of the program, was at Rosie’s bedside or working behind the scenes constantly to manage the medical side of Rosie’s care. “We, as physicians, have the tremendous privilege to closely collaborate with our families and surgical colleagues, making decisions and planning medical and surgical care together from day one,” says Dr. Namjoshi. “It’s an ideal way to take care of these children.”
To create a care plan for Rosie that would give her the best chance of intestinal rehabilitation, Dr. Namjoshi worked closely with surgeon-scientist James Dunn, MD, PhD. Each week, they, as well as other team members, held comprehensive meetings to review Rosie’s progress.
Lifesaving TPN
While every child with SBS seen in the program has unique needs, the focus is always on helping them move and digest food and absorb its nutrients so they can grow. This hinges on using total parenteral nutrition (TPN), which provides liquid nutrition directly into the bloodstream through a vein, bypassing the normal digestive process.
Fortunately, intestines are adaptable. “The beautiful thing is that TPN allows the intestines time to heal and regrow,” says Dr. Namjoshi. Like other organs in the body, the small and large intestines naturally continue to grow after birth as a child gets bigger. But unlike with other organs, this growth is driven by the high regenerative activity of intestinal stem cells. And when babies are born prematurely, their intestines grow more much more rapidly than those of full-term babies or older children, which also helps babies adapt and heal.
Rosie’s team calculated precise TPN prescriptions for her, helping reduce diarrhea and maximize how much she could start to take in through other feeding methods. This required close communication between her doctors, the pharmacist, dietitians, and nursing staff. TPN must be given slowly to allow the body to metabolize nutrients safely, avoid organ stress, and prevent life-threatening complications, especially in fragile patients like Rosie. She was started on TPN 24 hours a day. TPN has been a game-changer when it comes to SBS. “Before it was invented in 1967, people with the condition died—and now 99% of kids can go to school while on it,” says Dr. Namjoshi. “Babies on TPN can be active and get into normal kid trouble. Kids on TPN can play sports, travel, go to school, be creative. It allows a person to have a normal life while giving the intestine time to regroup.”
The slow road to recovery
Before Rosie went home from the hospital, Dr. Namjoshi and Dr. Dunn worked closely to decide the best time to close Rosie’s ostomy, which would free her from having to use an ostomy bag. The timing of this reversal procedure varies among health centers, and the timing is carefully considered. The Stanford Children’s Health program considers reconnecting the bowel within a few-months window to be important, in order to avoid a number of complications and to help with intestinal rehabilitation.
For example, prolonged use of an ostomy can delay the bowel’s adaptation process and increase dependance on TPN and also add stress to the liver. And there’s the family’s quality of life to consider. Ostomy care required at home is labor-intensive and emotionally taxing for the parent; closing the ostomy can significantly improve quality of life for both the child and caregivers. Rosie also had a gastrostomy tube (G-tube) placed, which delivers nutrition and calories directly into the stomach, to supplement her TPN and help reduce diarrhea.
After Rosie’s reversal procedure, Jasmine brought her home from the hospital, with her getting TPN feedings 22 hours every day. The team taught Jasmine everything she needed to know for central line care (where Rosie gets her TPN), TPN administration, G-tube care, and managing medications. They worked with her to make a plan to help Rosie gradually take in food through the G-tube and, bit by bit, by mouth. This was a balancing act, since managing diarrhea in kids with SBS involves continually adjusting the ratio of TPN, G-tube feedings, and feedings by mouth to support growth while promoting intestinal adaptation.
Providing this level of care at home can be overwhelming for parents, and the Stanford Children’s Health team makes sure that parents feel prepared before bringing their child home. Jasmine bonded with the program’s nurses in particular, including her “guardian angel nurse,” Colleen Nespor. “She guided me and gave me a lot of hope,” says Jasmine. “We were heartbroken and scared. She explained everything, like TPN. And she said something I’ll never forget when I asked her what would happen. She told me, ‘You’re going to take Rosie home and you’re going to love her.’ Words I always remember.”
The Intestinal Rehabilitation and Nutrition Support program actively helps parents in between checkups, too, with always-accessible support and telehealth appointments to help them manage the feeding program and address any complications, such as catheter infections, blockages, or breaks. Jasmine can always access Rosie’s dietitians and physicians, a dedicated nurse, and an office assistant so she can get answers to urgent questions, and Rosie regularly sees the team for checkups.
Slow and steady wins the marathon
While the program’s goal is to help children come off of TPN support completely, it’s not always possible in extreme cases of SBS, and the rehabilitation process is always slow. “Jasmine stands out as someone who really took ownership of Rosie’s rehabilitation,” says Dr. Namjoshi. “She was extremely enthusiastic and was hyper-focused on what was right for Rosie versus what might be normal for other kids.” Jasmine perfected the art of intestinal rehabilitation—pushing Rosie’s bowel to feed through G-tube feedings or by mouth, but pulling back if it was too much, causing diarrhea. Dr. Namjoshi likens the process to marathon training. “You can’t run 26.2 miles right after an injury or you’ll reinjure muscle or ligaments and may never recover,” she says. “Many parents have an instinct to feed, feed, feed, but Jasmine was very patient and allowed Rosie the time she needed to adapt.”
Rosie is now going to start transitional kindergarten in public school. Jasmine works closely with the program’s nutritionist to find what foods work well to eat by mouth and what to avoid. Rosie is all too happy to try it all. She’s about to graduate from preschool and, Jasmine reports, is a happy, smart little girl who isn’t afraid to show her family a little attitude. Rosie is also close to being potty trained. She’s come a long way from when she was a tiny baby and her mother didn’t know if she would be able to watch her grow up.
“It’s a big accomplishment,” says Jasmine. “It’s hard, stressful, and you never get past the trauma. But the team is always there to help. You just take it day by day, and it gets easier. Kids with SBS are warriors.”
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