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Fulfilling Dreams: A Young Boy Overcoming Short Bowel Syndrome at Stanford Medicine Children’s Health Blog

Stanford Medicine Children’s Health Intestinal Transplant Program Liberates Child from Dependency on Intravenous Feeding

For the first time in his life, Jah’Seki is envisioning himself playing football and soccer, enjoying summer camp swimming, and goofing around with friends—dreaming just like any other 9-year-old boy.

Jah’Seki was born with a condition that harmed his small intestine, necessitating the removal of a significant portion. This resulted in short gut syndrome and intestinal failure. To sustain his growth and survival, he has relied on total parenteral nutrition (TPN), or intravenous feeding, throughout his life. This meant being tethered to a machine for several hours daily, restricting his ability to freely engage in play and embrace life.

“Children with short gut syndrome lose out on much of their childhood. This had a profound impact on Jah’Seki and his entire family,” shared , a pediatric gastroenterologist and the medical director of the Intestinal Transplant Program at Stanford Medicine Children’s Health. Dr. Zhang has been overseeing Jah’Seki’s care since his early days, establishing a familial bond with him and his mother, Cynthia.

Exhausting All Avenues with Intestinal Rehabilitation

The specialized Intestinal Rehabilitation program, one of the few on the West Coast, diligently supported Jah’Seki’s well-being. This multidisciplinary team provided holistic care, including personalized nutrition plans, specialized nursing, social services, hepatology support, and intestinal surgery. The program’s goal is to offer nutritional assistance to aid compromised bowels in regaining function and growth, ultimately aiming to liberate children from TPN dependence. While many children benefit from this approach, Jah’Seki posed a unique challenge.

During his early years, Jah’Seki frequented the hospital every two to three weeks. The frequency subsided for a while around the age of 5 but escalated when he turned 8, leading to 14 hospitalizations in a single year. It was then decided that an intestinal transplant was necessary.

Embracing the Decision for an Intestinal Transplant

“I was initially hesitant about the transplant. When he was an infant, the team proposed it, but I had reservations about its success,” revealed Cynthia.

Placing her trust in Dr. Zhang, Cynthia sought her advice when Jah’Seki’s condition deteriorated significantly. Dr. Zhang reassured her, emphasizing that post-transplant life would not be more complex than their current struggles. She highlighted the potential improvement in Jah’Seki’s quality of life.

“When you hear about ‘quality of life,’ it gives you pause. He was not faring well. He was malnourished and extremely fragile,” Cynthia recalled. “After discussing with my husband, Marcus, and considering our limited options, we opted to put him on the transplant list.”

Jah’Seki’s parents were confident in the expertise of the Intestinal Transplant Program at Stanford Children’s—ranked second in the nation for transplant volumes, boasting a 100% three-year success rate over the past decade, and renowned for over 30 years of experience, research breakthroughs, and exceptional clinical outcomes in pediatric intestinal and multivisceral transplants.

Cynthia humorously acknowledged the challenges Jah’Seki presented to Dr. Zhang over the years, given his critical condition. She commended Dr. Zhang as an exceptional physician, emphasizing the deep care and affection she showed towards Jah’Seki.

Within a span of three months, a suitable intestinal donor was identified for Jah’Seki, who had recently turned 9 years old.

Overcoming Challenges Post-Transplant

While every effort was made to avert complications, intestinal transplants inherently carry risks.

“Intestinal transplants are notably prone to complications compared to liver and kidney transplants due to the complexity of the procedure,” noted Dr. Zhang. “Jah’Seki’s transplant encountered challenges, but with the collaborative expertise of specialists from various fields, we navigated through difficulties to ensure a successful outcome.”

Jah’Seki encountered numerous hurdles, with vascular supply issues discovered within 24 hours post-transplant. Prompt intervention by a Stanford Children’s interventional radiologist rectified the problem, underscoring the team’s vigilance and experience in managing such critical situations.

Despite facing setbacks like a blood clot necessitating the replacement of the original intestine, Jah’Seki and the team persevered through the complications. His hospital stay extended beyond four months, testing the resilience of his family.

“All we could do was hope,” shared Cynthia. “I had faith in the team’s ability to pull him through. Seeing Dr. Zhang at the hospital brought a sense of relief, akin to the reassurance one feels when their mother is present.”

Embracing a New Chapter Free from TPN Dependency

Three months post-transplant, Jah’Seki was discharged from the hospital. His transplanted bowel functioned optimally, absorbing nutrients effectively. He bid farewell to TPN and the central line that had been a constant in his life. Unlike some children reliant on TPN, Jah’Seki displayed a healthy appetite, eagerly embracing meals.

“I should have named him ‘Jah’Seki I-love-to-eat.’ I’ve seen his teenage cousins eat this much, but witnessing a 9-year-old do the same makes you wonder where it all goes,” Cynthia humorously remarked.

In the near future, Jah’Seki anticipates the removal of his colostomy bag, a necessary fixture for proper colon drainage. Its removal will pave the way for his active participation in sports, a long-awaited dream for this spirited youngster.

“His family’s dedication to post-transplant care and their staunch advocacy for him is commendable,” mentioned , the liver and intestine transplant coordinator overseeing Jah’Seki’s care into adulthood.

Nurturing Hopes for a Brighter Future

The family is cautiously beginning to envision a brighter future. Cynthia contemplates a long-overdue family vacation—a luxury they had foregone for a decade due to the constraints imposed by TPN.

“Recently, Jah’Seki told me, ‘It’s go time! Time to do everything I have ever wanted to do!’ He dreams of visiting Miami, Santa Cruz, and returning to Stanford Children’s,” shared Cynthia.

Amidst the lingering astonishment from their arduous journey, Cynthia marvels at Jah’Seki’s resilience and his unfaltering spirit despite spending a significant portion of his life in and out of hospitals. She affectionately refers to him as the “strongest little man known to man.”

“A newfound zest radiates from him, brimming with excitement,” observed Dr. Zhang. “Jah’Seki’s remarkable progress exemplifies why we undertake such intricate surgeries with inherent risks—to offer children like him the chance at a normal life. My aspiration is that in six months, his scars may be the only reminder of his past struggles, with no trace of his short gut syndrome or transplant journey.”