Julian’s Story: Liver-kidney Transplant ‘Biggest Gift We Could Ever Receive’

For nine-year-old Julian and his parents Lisa and Brian, February 7, 2022 had all the makings of a typical Monday. After school, Julian tagged along as Lisa shopped for groceries. As they carried their bags upstairs to their home, Lisa’s phone rang. With her hands full, she let the call go to voicemail – only to discover a life-changing message soon after. 

After several months of waiting, doctors at Lurie Children’s had found a new kidney and liver for Julian.

The milestone had been years in the making, as Julian’s medical journey started before he was born. While in-utero, doctors detected his kidneys were enlarged and the amniotic fluid was low in the uterus. Julian was born with polycystic kidney disease and also had cysts on his liver. At three days old, he was transferred to Lurie Children’s, where a nephrologist was ready to care for him and guide his parents through a treatment plan. A team of specialists helped the new parents prepare for the reality that their son would someday need both a kidney and liver transplant. 

In 2019, after years of good health, Julian’s kidney and liver function began to falter. The family met with Lurie Children’s transplant team to discuss their options, ultimately deciding on a liver-kidney transplant as the best course of action.

“At Lurie Children’s, we felt like we were in great hands,” Lisa said. The hospital’s Siragusa Transplantation Center ranks among the top pediatric transplant centers in the country, not just in volume, but in patient survival rates.

Julian prepared to join the organ donation waitlist not long after the COVID-19 pandemic hit the U.S. He experienced heightened anxiety related to his health, the pandemic and school, and worked with a behavioral health specialist at Lurie Children’s to develop coping strategies.

“They really helped prepare him for the procedure, and also deal with stress,” Lisa said. “His therapist also helped him become his own advocate for his needs while he was in the hospital.” 

Prior to transplant, surgeons removed one of Julian’s kidneys and he began dialysis. All the while, the family patiently waited for the call. “Throughout the wait, we’d tell him, ‘we’re waiting for someone to make the right one just for you,’” Lisa remembered. 

When it was finally time for transplant in February 2022, “Julian couldn’t believe it,” Lisa said. “It all happened so fast. I told him to pick out what he wanted to take to the hospital. If it turned out that this was a good match, the surgery would be the next morning. And it was.”

The morning of his surgery, Julian’s nurses – some of whom have cared for him since he was a baby – arranged a send-off celebration as he headed to the operating room. During the nearly 14-hour procedure, Julian’s relatives checked in by phone with his parents. 

The transplant was successful, and after three weeks of intensive physical and occupational therapies, Julian returned home. Post-transplant, he enjoys eating a less restricted diet and having the physical freedom to swim, play at the park and join any sports he likes.

“To his donor family, we’d like to say thank you,” Lisa said. “You gave us the biggest gift we could ever receive.”

About the Siragusa Transplantation Center
Lurie Children’s (formerly Children’s Memorial Hospital) performed its first transplant in 1964 and has remained a leader in transplant surgery and advanced hepatobiliary (related to liver, gallbladder or bile ducts) surgery ever since. The hospital’s Siragusa Transplantation Center ranks among the top pediatric transplant centers in the country, not just in volume, but in patient survival rates. E​ach of our transplant programs have high rates of graft (transplant) success and patient survival three years after surgery. Learn more

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