Boy Transformed by Combined Intestinal-Liver Transplant

Stanford Medicine Children’s Health’s multivisceral transplant program is the only one on the West Coast

Ezekiel (Zeke) Atchison loves doing puzzles, stacking blocks, and playing with toys with moving parts. “He definitely has an engineering mind,” says Rayma, his grandmother and custodial parent.

While Zeke sounds like an average 5-year-old, the truth is he is fortunate to be alive and just now is beginning to really thrive.

When he was a baby in the womb, his intestines didn’t form properly—a condition called intestinal malrotation. They were twisted and in the wrong place. Unfortunately, the twists cut off blood flow, and much of his intestines died.

After birth, Zeke was quickly flown by helicopter to a nearby children’s hospital in Phoenix. He had immediate surgery to save as much of the intestines that they could.

“They removed about 90 percent of Zeke’s intestines,” Rayma says. “He was left with about 1% of his small intestine and less than half of his large.”

Without working intestines, Zeke required total parenteral nutrition (TPN), an intravenous (IV) nutrition feeding method via a central line. TPN meant he was hooked up to a machine for several hours every day.

Zeke went home and received support from his extended family—Rayma; his grandfather, Wayne; his aunt, Tanya; and his great-grandmother, Maggie—where they live near Phoenix, Arizona.

Coming to Stanford Children’s for an intestinal-liver transplant evaluation

One day near Zeke’s first birthday, he became unresponsive. Rayma rushed him to the hospital, where his doctors discovered that the TPN had damaged his liver. He was in late-stage liver disease.

“That incident led us to a referral to Stanford Medicine Children’s Health for a transplant evaluation,” Rayma says.

His family met with the Pediatric Intestinal Transplant team—the only multivisceral (multiple abdominal organ) transplant program on the West Coast. The program has performed more than 50 pediatric intestinal transplants since its inception and achieved a 100% three-year success rate in the last decade, according to Scientific Registry of Transplant Recipients (SRTR) data.

“When we evaluated Zeke, it was clear that he needed an intestinal and liver transplant,” says Ke-You (Yoyo) Zhang, MD, pediatric gastroenterologist and director of the Pediatric Intestinal Transplant Program.

Waiting for donor organs

Little Zeke faced a big hurdle: enduring a long wait for donated organs. “Zeke came to us very small for his age, and he only had so much space in his abdomen. We needed to wait for the perfect match for his size and age,” Dr. Zhang says.

Zeke was very sick and fragile, and he required 24-hour attention. To go home and await transplant, Rayma received intensive training from the multivisceral transplant care team on managing Zeke’s intestinal and liver needs, including his central line, TPN medications and pump, gastrostomy tube, and monitoring his health for signs of change. They were always available for questions and guidance. “The team at Stanford cares enough to make sure caregivers know what they are doing,” Rayma says.

Rayma’s skills and commitment paid off. During the multiyear wait, Zeke never had a single central line infection and had few inpatient visits.

“We met with the Stanford team virtually, who often exclaimed that Zeke was the ‘healthiest sick child they had ever seen.’ That felt good to hear,” Rayma says.

“Rayma is an incredible caregiver for Zeke. His health while awaiting transplant is a testament to her diligence and hypervigilance in caring for him,” Dr. Zhang says. “She became a part of the care team, and we trusted her.”

In the middle of the night, nearly three years after Zeke was listed for transplant, Rayma got the call her family had been waiting so desperately for: The Stanford team had a liver-intestine for Zeke. “When I saw the Palo Alto area code come up on my phone, I thought, ‘This is it!’ My heart went in my throat.”

A successful multivisceral transplant for Zeke

Zeke’s combined liver-intestinal transplant went perfectly, with just one complication that was easily managed and zero organ rejection. Stanford Children’s prides itself in handling the toughest cases and achieving exceptional outcomes for very sick babies and children.

Dr. Zhang reveled in replacing Zeke’s old liver, which was brown, thick, and leathery, with a new healthy one. “His donor intestines and liver came together as one unit, called en bloc, and were transplanted together. They were both nice and pink,” she says.

Zeke recovered remarkably well. He needed to stay in the hospital just 43 days after transplant, one of the shortest stays ever for an out-of-state patient in the program. A major victory was getting Zeke home for Halloween so he could trick-or-treat as his favorite Paw Patrol character.

“Zeke’s care was amazing. Stanford has a different standard of care. You are with them so much that you feel like you are part of their family and they are part of yours. We knew every nurse on the third floor, and we love them and they love us,” Rayma says.

When Zeke first came to Stanford Children’s, he would shake from fear due to medical anxiety. Dr. Zhang gave him a special stuffed animal, named Belly Dog. Belly Dog is weighted, and his pressure on Zeke’s chest calms him. The staff also catered to his unique needs as an autistic child, ensuring that he felt comfortable.

“He still sleeps with Belly Dog every night,” Rayma says.

Home and growing by leaps and bounds

Now that Zeke is home with a working liver and intestine, he is making up for lost time. Rayma quickly got him on formula and off TPN, which frees Zeke from cords and pumps and carrying a machine around in a backpack. He still receives nutrition and medicines through a gastrostomy tube (a tube inserted into the stomach), but he is learning to eat by mouth, a task that can be difficult for kids who never had a chance to practice as babies. Zeke is receiving feeding therapy locally, and Rayma hopes for a day when he can eat all his meals by mouth.

“Zeke is more vibrant since the transplant. He has progressed so much. I feel like he is growing up fast,” Rayma says.

Zeke is nonverbal and has developmental delays, but he communicates through actions, sounds, hugs, and smiles. Since the transplant, he is starting to babble. He has even said a word here and there.

“Now that he can absorb nutrition, his brain is waking up and connecting the dots. I think he will be talking soon,” Rayma says. She looks forward to the day when he can go to kindergarten.

Dr. Zhang is endlessly amazed by the resiliency of her young patients. And Zeke holds a special place in her heart. “I went through this whole journey with him, and I have about 5,000 pictures of him on my phone. He is the sweetest boy and incredibly strong. I love how he looks at me with those big, beautiful brown eyes,” she says. “I absolutely love him.”