Short Bowel, Big Life for Adopted Girl

Remarkable mom and Intestinal Rehabilitation and Nutrition Support program give patient a second chance at a full life

When Analeise Guild met her adoptive daughter Cali at 9 months old, Cali was living at Lucile Packard Children’s Hospital Stanford when she wasn’t in foster care.

Cali was born with gastroschisis, a birth defect where her intestines grew outside her body. Most of her intestines didn’t survive, and she ended up with a rare disease called intestinal failure due to short bowel syndrome (SBS). Kids with intestinal failure rely on parenteral nutrition, or TPN, which delivers liquid nutrients through a central line or semipermanent IV.

“Cali lost 90% of her intestines at birth and has been on nutrition support (TPN) most of her life,” Analeise says.

Because of her intestinal failure, she required 17 hours of TPN every day as an infant. It was hard to find foster parents willing to take on the responsibility.

“People would train to care for her, then give up,” Analeise says. “My mom has had over 150 medical foster children in her lifetime, and I grew up with some of them. My mom told me, ‘You lived this, you should adopt her.’ It was meant to be.”

Through exceptional care from doctors and constant dedication from Analeise, 11-year-old Cali now spends just three nights a week on TPN—a major accomplishment for a girl with such a short bowel. She happily eats all of her meals with her family.

“When she was a toddler, we were lucky if we could coax her to eat a Cheerio a day,” Analeise adds.

Analeise describes herself as “almost a home nurse” because of the extensive training she received from Packard Children’s Intestinal Rehabilitation and Nutrition Support program—one of just a few programs like it on the West Coast. At first, she relied heavily on the team’s input until she gained confidence in her own skills. The program’s dedicated clinical nurse specialists (CNS) taught her how to mix formula, connect IV pumps, prevent infections, and attach the central line or g-tube for nutrition.

“Colleen Nespor, MSN, CNS, has had my back on this journey. It’s much more than a job for her; she truly cares for every single child,” Analeise says.

Today, Cali receives regular checkups where her team of doctors, nurses, pharmacists, and dietitians determine how well her body is absorbing nutrients. They then adjust her TPN as required to help her get enough calories, nutrients, and micronutrients to grow. The Children’s Home Pharmacy, the hospital’s infusion and specialty pharmacy, mixes custom TPN for close to 1,100 patients, including Cali, in California and sends the prescription, g-tube supplies, and formula straight to their homes every week. The Intestinal Rehabilitation and Nutrition Support program is comprehensive and multidisciplinary, supporting the whole child and family with individualized nutrition plans, nursing support, family support, hepatology support, and intestinal surgery.

“Every child is unique, so we walk beside parents to empower them to become experts on their own child, and embolden them to navigate the complex clinical world of intestinal rehabilitation,” says clinical nurse specialist Colleen Nespor.

After adopting Cali, Analeise was determined to wean her off TPN entirely—the ultimate goal of many parents of children with short bowels. With feeding therapy—and the motivation to keep up with her four brothers and sisters—Cali succeeded. From ages 5 to 7, she was fully off TPN. However, she was not absorbing enough nutrients and was not growing adequately, so she needed to go back on limited TPN. Her small intestine was simply too short, and it also had challenges with motility.

“Intestinal rehabilitation can be a long, slow process, but we are in it for the long game. The payoff is big when children can come off TPN and grow and develop normally. This is always our goal,” says Shweta Namjoshi, MD, MPH, CNSC, medical director of the Intestinal Rehabilitation and Nutrition Support program and the Children’s Home Pharmacy. “It requires a lot of teamwork and diving in deep, but our track record of supporting children and families is excellent.”

It is truly rehabilitation because with nutrition support, the bowel can literally grow and regain function. In time, it becomes strong enough to work on its own without TPN.

“We call this process intestinal adaptation,” Namjoshi says.

Even though Cali’s gut was not long enough to achieve complete independence from TPN, she now only needs support from TPN for 10 hours a day, three days a week—all while she is sleeping during the night. It’s a major feat for a child with such a short bowel, born with gastroschisis. Cali is growing well and thriving today.

“She’s not the smallest in her class, and she lives a normal life for a sixth-grade girl—swimming, riding bikes, rollerblading, and horseback riding. She sees nutrition support as a medical issue, one she can handle,” Analeise says.

Analeise is extremely grateful for the team that stands beside her at Packard Children’s, including John Kerner, MD, Cali’s gastroenterologist. She proudly refers other parents who have children with short bowels to the hospital.

“The doctors, nurses, dietitians, social workers, and pharmacy team truly care, and that makes all the difference,” she concludes.