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Guilianna’s Story: After Long-Awaited Intestinal Transplant, Freedom to be a Kid

June 04, 2021

At 10 years old, Guilianna has seen her share of hospital rooms. Born prematurely at 32 weeks with her twin sister in 2011, Guilianna spent nearly her entire first year of life in a Neonatal Intensive Care Unit (NICU) at another medical center. As a baby, she developed an intestinal condition known as necrotizing enterocolitis (NEC) that limited her growth and made her body susceptible to infections. Common among premature babies, NEC happens when intestinal tissue is injured or inflamed, causing bacteria to pass into the bloodstream.

Throughout her childhood, Guilianna and her family learned how to cope with NEC with expert help from Lurie Children’s Intestinal Rehabilitation and Transplantation Program.

Then, in spring 2021, Guilianna and her family received the call that changed their lives: A match had been found for Guilianna’s intestinal transplant, a procedure that could improve her overall health while simplifying her life.

While pediatric intestinal transplants are rarely performed because of their challenging nature, at Lurie Children’s, the Intestinal Rehabilitation and Transplantation Program has a 100-percent patient survival rate well above the national average of 86 percent at one year post-transplant. The program is one of a few in the nation and the only program in Illinois dedicated to caring for children with an improperly functioning small bowel (small intestine).

Guilianna was listed for an intestinal transplant in August 2019, a decision that followed years of specialized care to manage her condition. As a newborn, Guilianna underwent surgery at another medical center to remove a large portion of her bowel, causing her to have short bowel syndrome. To help her body absorb nutrition, she began to receive nutrition intravenously through a central line and eventually received a G tube that allowed her to receive part of her nutrition through her stomach in addition to the nutrition she received through her central line.

Finding Answers, Expertise and Hope

In February 2014, Guilianna and her family met with the team at Lurie Children’s Intestinal Rehabilitation Program for a second opinion. Dr. Valeria Cohran and surgeon Dr. Riccardo Superina followed Guilianna’s health closely for years following that initial consultation, offering her family options to improve her overall health.

Prior to transplant, Guilianna received the serial transverse enteroplasty procedure (STEP) at Lurie Children’s, a surgical technique used to increase bowel length to help absorption in the intestine so it can function more efficiently. This kept her strong and healthy enough to avoid a transplant for several years.

The day the family received the call about the organ match is one they will remember forever.

“Guilianna’s sister was at the neighbor’s house when we got the call,” says April, the girls’ mother. “As soon as the call came through, we ran over to the neighbor’s house and I told them, ‘We got the call! Guilianna is getting transplanted!’ We were all ecstatic and our neighbors were so helpful. They kept saying, ‘Go! We’re so excited for Guilianna!’”

Post-transplant, Guilianna continues to make a strong recovery while she looks forward to going home to reunite with her twin sister. She has hopes for a camping trip in the future.

Guilianna and her family remain incredibly thankful for Guilianna’s transplant and for the freedom it has allowed their family.

“I feel like I have been waiting for Guilianna’s transplant for 10 years,” April says.

Learn more about Lurie Children’s Intestinal Rehabilitation and Transplantation Program