Boy With Short Bowel Syndrome Living the Dream of a Better Life

Intestinal Transplant Program at Stanford Medicine Children’s Health frees child from a lifetime of intravenous feeding

For the first time in Jah’Seki’s life, he’s imagining playing football and soccer. He’s seeing himself at summer camp swimming and goofing around with friends. In other words, he’s dreaming like any other 9-year-old boy.

Jah’Seki was born with a condition that damaged his small intestine, requiring much of it to be removed. The result was short bowel syndrome, or short gut, and intestinal failure. To survive and grow, he has been on total parenteral nutrition (TPN)—intravenous feeding—his entire life. He spent several hours a day hooked up to a machine, unable to freely run, play, and take on life.

“For children with short gut, a lot of their childhood is taken away from them. It was incredibly impactful on Jah’Seki and his whole family,” says Ke-You (Yoyo) Zhang, MD, pediatric gastroenterologist and medical director of Pediatric Intestinal Transplant at Stanford Medicine Children’s Health. Dr. Zhang has cared for Jah’Seki his whole life in the Intestinal Rehabilitation and Nutrition Support program, starting when she was in training. She jokes that she and his mom, Cynthia, “grew up together.” She considers them family.

Trying everything with intestinal rehabilitation

The comprehensive Intestinal Rehabilitation program, one of just a few on the West Coast, worked diligently to keep Jah’Seki well. The multispecialty team supported him holistically with an individualized nutrition plan, specialized nursing, social services, hepatology care, and intestinal surgery. The purpose of the program is to provide nutritional support to help compromised bowels grow and regain function. The ultimate goal is to free kids from TPN. While this happens for many kids, Jah’Seki was an exception.

As a young child, Jah’Seki was in the hospital every two to three weeks. Then, when he was around age 5, things settled down for a while. That changed when he turned 8 years old and was hospitalized 14 times in one year. It was time to consider intestinal transplant.

Deciding to go ahead with intestinal transplant

“I did not want him to have a transplant. I was so against it. When he was a baby, the team suggested it, but I was worried about its success,” says mom Cynthia.

She trusted Dr. Zhang, so when things got really rough, she asked the doctor what she would do if he were her child. Dr. Zhang said that life after transplant would never be more complicated than their lives were right then. She spoke of Jah’Seki’s quality of life.

“When you hear that term quality of life, it makes you take a step back. He was not doing well. He was malnutritioned and so fragile,” Cynthia says. “I talked with my husband, Marcus, and he said, ‘What option do we have?’ So we put him on the transplant list.”

Jah’Seki’s parents had full confidence that they had the right team for the job. The Pediatric Intestinal Transplant Program at Stanford Children’s is second in the nation for volumes, having performed more than 51+ intestinal transplants in the last 10 years and maintaining a 100% three-year success rate. The program is recognized across the nation for its 30+ years of experience, research discoveries, innovations, and much-better-than-average clinical outcomes. It is a chosen pediatric referral center for highly complex intestinal and multivisceral transplants.

Cynthia jokes that Jah’Seki has made Dr. Zhang earn her degree over the years, because he was such a critically ill child. She calls Dr. Zhang an amazing doctor. “When Dr. Zhang sees Jah’Seki, there is so much love, and I really love that.”

Within three months, the team located an intestinal transplant donor for Jah’Seki, who had just turned 9 years old.

Encountering complications but powering through

Everyone worked hard to avoid complications, but complications are inherent with intestinal transplant.

“Intestinal transplant is known to have complications, much more so than with liver and kidney transplants. It is a massive and highly complex surgery,” Dr. Zhang says. “Jah’Seki’s transplant was not straightforward, but we pulled together the best minds from multiple specialties and did everything in our power to manage difficulties and make sure we succeeded.”

Jah’Seki faced every challenge imaginable. Within 24 hours of transplant, the team discovered problems with the vascular supply to the new organ. There’s no protocol to detect such problems, but small clues alerted the team that something was not right. They called in Avnesh Thakor, MD, a Stanford Children’s interventional radiologist who came in the middle of the night to open the vessel and restore blood flow to Jah’Seki’s new intestine.

“The fact that we caught it early attests to our decades of experience and profound understanding of what to watch for,” Dr. Zhang says.

Despite heroic efforts, a blood clot formed and the original intestine was lost. The team rallied and located another a few weeks later. Complications continued, but ultimately the team persevered. Jah’Seki was in the hospital for over four months. It was a long road for the family.

“All we could do was pray,” Cynthia says. “I had confidence that the team would pull him through. When I would see Dr. Zhang in the hospital, it was a piece of relief. It was like when you see your mom and you think, ‘OK, Mom’s here. Everything is going to be OK.’”

Coming home and leaving TPN behind

Three months ago, Jah’Seki was discharged from the hospital after transplant. His bowel is working perfectly, absorbing nutrients just as it should. He is off TPN and without a central line for the first time in his life. Sometimes, kids on TPN do not like to eat by mouth, but that’s not true of Jah’Seki. He has a healthy appetite.

“I should have named him ‘Jah’Seki I-love-to-eat.’ I’ve watched his teenage cousins eat this much, but to see a 9-year-old do it, you have to wonder where he is putting it,” Cynthia says.

Soon, he will have his colostomy bag removed, something he has had to live with to ensure proper drainage from his colon. When that goes, he can play sports, something he has wanted to do his whole life as a rough-and-tumble kind of kid.

“His family is fantastic. They are very on top of posttransplant care and such good advocates for him,” says Katherine Sear, CPNP, liver and intestine transplant coordinator, who will care for Jah’Seki until he becomes an adult.

Dreaming of better days

The whole family is beginning to dream. They are still a bit shell-shocked from everything they’ve been through, but Cynthia is considering a real family vacation—something they haven’t had in 10 years because TPN isn’t compatible with travel.

“Jah’Seki recently said to me, ‘It’s go time! Time to do everything I have ever wanted to do!’ He wants to go to Miami and to Santa Cruz. He wants to go to transplant camp through Stanford Children’s,” Cynthia says.

Cynthia notices Jah’Seki smiling more and laughing more with his sister. She is amazed by his resilience and how little he resents having spent the majority of his life in and out of the hospital. She tells him that he’s the “strongest little man known to man.”

“A light came back on, and he’s so excited now,” Dr. Zhang says. “Jah’Seki’s outcome is why we consider putting kids through such a major surgery with many risks. We want them to have new intestines so they can live a regular life. My hope is that in six months you may see scars but nothing else to show that he had short gut or endured a transplant,” Dr. Zhang says.

Learn more about Stanford Medicine Children’s Health Pediatric Intestinal Transplant Program >