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Kimberly is only six years old, but her parents, Flor and José, say she is the strongest person they know.
Kimberly was born with short gut syndrome and gastrointestinal blockage, making eating and going to the bathroom complicated. In her short life, she has endured many tests and treatments, including getting an ostomy bag, a pouch surgically connected to her intestine to allow waste to exit her body safely.
“It was very hard on her and for us to see her encounter so much, but God has his plans,” Flor said.
The Chicago parents knew an intestine transplant for their daughter may be necessary one day. Late last year, an infection in her colon put Kimberly’s name at the top of the list for a new organ.
Exactly six months after being pushed to the top of the list, Flor was grocery shopping with her family when she got the call that left her almost speechless: there was an organ for Kimberly, and she should report to the hospital that night. They put their milk and eggs back and went home to pack.
“It was a happy time, but I also knew that difficult times were coming,” Flor said.
On May 22, Kimberly received the new organ from a deceased donor during a 10-hour procedure with pediatric liver and intestinal rehabilitation experts and transplant surgeons Dr. Riccardo Superina and Dr. Caroline Lemoine.
Intestine transplants are relatively rare. In 2020, only 34 young people in the U.S. 17 and under received an intestine transplant, according to data from the Organ Procure and Transplantation Network. These transplants are often lifesaving for recipients with failing intestines who have not successfully found other effective treatments.
Though she has never met the family of Kimberly’s donor, Flor said she prays for them every day. “They did so much for us. I’m always hoping for and praying for them,” she said.
Following the surgery, Kimberly spent time in Lurie Children’s Pediatric Intensive Care Unit before moving to an inpatient floor, where the family lived for almost four months while the girl healed.
“There were difficult and hard times, but every day there was some positive news to take comfort in. And Kimberly was always very positive and brave. We know that everything would get better,” Flor said.
And things have improved. In August, Kimberly was able to leave the hospital and live at home again. Today she is monitored by Lurie Children’s hepatobiliary and gastrointestinal experts, including Dr. Valeria Cohran, Katherine Brennan, APRN-NP, and Teresa Kodiak, APRN-NP (Advanced practice registered nurse-nurse practitioners). While Kimberly will likely need additional procedures to take down her ostomy bag, she is expected to one day be off IV nutrition (known as TPN, or Total Parenteral Nutrition), which she has needed her entire life.
At home, Flor said her happy, smart girl likes to sing and play with engineering-related games and toys, like Legos. She talks about being a doctor one day and knows exactly when she needs to take her medications. “She is very on top of things,” Flor said.
The family has a lot to look forward to in addition to Kimberly’s improving health. In February, Kimberly will become a big sister, as Flor is expecting a baby boy – a pursuit Flor and José had put on hold until Kimberly’s health stabilized.
“We are so happy,” Flor said, adding how grateful her family is for the many doctors and nurses who have cared for her daughter. “All the people who work at Lurie Children’s, they’re like angels in our lives and in Kimberly’s life.” Watch a Univision Chicago news clip featuring an interview with Flor.