‘Fighter’ Grace marks 10 years since her kidney transplant

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Grace, at age 1.5, about one month after her kidney transplant about 10 years ago

The small scars on 11-year-old Grace’s body are a source of questions for the fifth grader. That’s because she was only 19 months old when she had a kidney transplant at Lurie Children’s. Today, almost 10 years since her transplant, the scars are virtually the only evidence of her previous health challenges.

Before Grace was born, she was diagnosed with autosomal recessive polycystic kidney disease, a rare condition that often threatens the life of the baby. About 30 percent of newborns with the condition don’t survive their first week of life.

Soon after the shocking diagnosis, her parents Brigid and Jamie met with Dr. Jerome Lane, an expert in fetal nephrology, or kidney diseases, at The Chicago Institute for Fetal Health at Lurie Children’s.

“He was very honest and realistic of Grace's chances for survival, but also gave us reasons to be hopeful,” recalled Brigid.

The family learned that kidney transplant would offer their baby the best outcome possible.

Grace was born at 36 weeks and immediately proved herself to be a fighter, her parents recalled. She spent the first 61 days of her life in the Neonatal Intensive Care Unit at Lurie Children’s, where nurses and kidney doctors monitored her regularly. She was then hospitalized off and on at Lurie throughout the next 18 months of her life.

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Grace, right, with her dad and kidney donor, Jamie

Meanwhile, the family received comforting news: Jamie’s blood type matched his daughter’s, and after going through a rigorous donor work-up, he learned that would be able to donate one of his kidneys to her. Most healthy people can live normal lives with just one kidney, and Jamie said there was “no question” he or Brigid would serve as Grace’s donor if they were able.

By the time she was 18 months old, despite a scary occurrence of sepsis after her diseased kidneys were removed, doctors said Grace was ready for the transplant. Her non-functioning kidneys were removed, and she received one of her dad’s kidneys at the hands of Lurie Children’s world-renowned pediatric transplant surgeon Dr. Riccardo Superina and a team including pediatric anesthesiologists and nurses.

Just weeks later, the family was able to return to home to the Chicago suburbs with their much healthier little girl.

“Within two days, she was breathing on her own and perked up. It was exciting to see,” Brigid recalled.

Today, 10 years since the procedure, Grace loves to travel and participates on a traveling swim team.

She enjoys music, movies and she participated in a school play this year.

“If you didn’t know her background and didn’t see the scars on her stomach or from her ports, you would never know (about her transplant),” Jamie said.

Grace follows up twice a year with Lurie Children’s pediatric nephrologists (kidney specialists) and occasionally with cardiology, hepatology and endocrine specialists as well.

“We can’t say enough positive things about our experience there,” Brigid said. “Lurie Children’s providers and nurses became our family for a while.”

When the family looks back on their transplant experience, they reflect on Grace’s resilience and admirable spirit and drive – and learning to recognize just how special and fragile life is.

“It makes us really try to experience life as much as we can,” said Jamie, adding, “We were very fortunate that I was an exact match for Gracie and it helped her get a healthy kidney more quickly than if she had to go on the transplant waiting list. Others are not as fortunate, so we highly encourage people to consider being a living donor as there are thousands of families on the transplant wait list whose lives could be changed if more people considered being a living donor – it's a transformational experience that I think about daily."

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