Sponsored By Stanford Childrens Health

STANFORD — Shortly after Odin Trebesch’s birth, his parents, Tara and Larry, learned that his kidneys were failing. Instead of leading with fear, they led with love.

“My husband and I were firm that we had the emotional and intellectual capacity to do whatever it took to get Odin through,” says Tara Trebesch.
After an easy natural birth—charmed by the fact that Tara delivered on her due date—Odin started dropping weight and becoming lethargic. On day 11, the couple learned the word creatinine, a normal result of metabolism. It’s something doctors measure to determine kidney function. Odin’s creatinine was extremely high for a newborn, and he was rushed to an emergency room near home.

Over the next 24 hours, the Trebesch family learned that Odin had a blockage in his urinary tract, which had severely damaged his kidneys. Doctors warned Tara and Larry of possible intellectual and developmental delays, and a long road that would eventually require a kidney transplant.

The newly married couple were shaken but not deterred. With robust support from their family, they took the next step, and another after that. In particular, Tara found resolve to push forward after an impactful conversation with her mother.

“My mother said, ‘It’s not his fault that he needs you so badly, and no one else can be his mother,’” Tara exclaims.

Over Odin’s first year, the family formed Team Odin, complete with T-shirts bearing the Viking symbol. They built a team of doctors, psychologists, therapists, and family to support Odin. As part of their care plan, they visited Lucile Packard Children’s Hospital Stanford.

“The family had received very shocking news from the beginning of his life, but instead of seeing it as a finality, they saw it as something they could work through and have treated,” says Waldo Concepcion, MD, director of pediatric kidney transplantation at Stanford Children’s Health. “I am so glad they sought a second opinion from us so we could help them achieve their successful outcome.”

Doctors with the hospital’s Pediatric Kidney Transplant program have performed more kidney transplants on children than any other doctors in the Western United States. With one-year and three-year kidney transplant rates of 100%, the team confidently told Tara and Larry that they could help Odin.

“We want excellent outcomes for every single child that we see,” says Amy Gallo, MD.

When Odin first arrived at Packard Children’s, he was struggling. At 9 months, he weighed a mere 13 pounds and ranked –1 percent for height and weight on the growth chart. It was clear that his kidneys were no longer working. The Packard Children’s transplant team recommended dialysis in order to ready him for transplant. The team likes children to be at least 10 kilograms (22 pounds) for transplant, but it isn’t a hard and fast requirement.

“Some centers make 20 or 30 kilograms the cutoff, but our very advanced transplant team is capable of doing transplants at an early age successfully. The norm is to measure success after one, three, and five years, but we measure success at 10, 15, and 20 years,” Dr. Concepcion says. “To get these results, you have to look beyond the transplant. It’s the pre- and post-care that creates exceptional outcomes, and we follow our patients for life.”

Dialysis is a key contributor to the transplant program’s excellent survival rates. A multidisciplinary dialysis team kept Odin in optimal physical condition while boosting his morale with fun activities during dialysis. Odin also received a gastro feeding tube to help him grow.

“I wanted to believe Odin could overcome his kidney issues, so I fought dialysis. A brave nurse helped me get past my fears,” Tara says. “She implored me to consider his brain development, and also impressed upon me the important fact that with kidney disease we have a bridge to transplant, and that bridge is dialysis.”

Odin started thriving once on dialysis. He grew, had good energy, and was in good spirits. At 16 months he reached adequate health for transplant. Tara and Larry were both matches as kidney donors, but Larry matched best, and he was more than willing to give the ultimate gift as a father. After several tests, Odin and Larry underwent tandem surgery for kidney transplant with Dr. Concepcion and Dr. Gallo.

“I am so impressed by the Trebesch family. They challenged us and asked a lot of questions, not to be obstructive but to make sure Odin received the very best care,” Dr. Gallo says. “They are the ultimate parents. Tara was always singing to Odin or reading to him. She has a voice like an opera singer, and walking into his room was like walking into heaven.”

The couple expected good results, since Packard Children’s is nationally ranked number 11 in Nephrology by U.S. News & World Report and is the highest-ranked children’s hospital for nephrology in California. Yet, transplant surgery is inherently stressful. Thankfully, Odin responded remarkably well to his new kidney.

“To our amazement, Odin was his happy self after six days, and we were home by 10 days,” Tara says.

Tara and Larry are grateful every day for Odin. Today, he’s an active 3-year-old who is in the 88th percentile for height and weight. He hasn’t needed a hospital stay since his transplant.

“At Packard Children’s, we never turn any child away with complex kidney disease who needs transplant. We always find a way to do it,” Dr. Concepcion says. “It’s our passion to care for kids like Odin.”

Odin has caught up on all of his developmental milestones. Last fall, he started preschool.

“It’s almost as if it never happened,” Tara says. “Both Odin and Larry continue to thrive, thanks to the wonderful care and support we received at Stanford.”

To learn more visit: kidneytransplant.stanfordchildrens.org

Learn more at stanfordchildrens.org

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