TBT: 2012 Miracle Kid Daly Luciano

Living in Puerto Rico with his family, 3-year-old Daly Luciano paid a visit to a local doctor’s office after developing an infection on his head after being scratched by a cat. Hoping for a minor diagnosis, family members were shocked when lab work revealed something much more life threatening.

Tests revealed the presence of an extremely rare kidney disorder called Nephrotic Syndrome-C1Q. Although Daly’s parents Omar and Ingrid Luciano already were planning to move to the United States, their departure was accelerated after learning about Daly’s syndrome. The Lucianos knew they would need specialized care to help treat their ill son.

“Daly’s diagnosis was a complete shock for us,” Omar said. “We knew we would have to act fast if we wanted to save our son’s life.”

Daly’s aunt, already living in Sunbury, had heard of Janet Weis Children’s Hospital at Geisinger and its great reputation for providing young patients with the top quality care. In no time, Daly and family were in the U.S. and Daly was scheduled for further testing at Geisinger.

A kidney biopsy showed that Daly’s kidney disorder was causing him to lose all of his proteins and vitamins. His body began to swell as he gained weight. His mood changed often and his bone health was slowly diminishing. Daly made many trips back and forth to Janet Weis Children’s Hospital so doctors could drain the ten pounds of fluid his small body was retaining. In August, Daly was re-admitted into the hospital for high blood pressure and exhaustion. It was then that doctors learned that Daly’s kidneys had stopped working.

With Daly’s time running out, the staff began kidney dialysis to eliminate the excess fluid. Staff members taught the Lucianos how to do peritoneal dialysis at home to help with fluid retention when necessary. The Lucianos continued the at-home dialysis for six months. After a while, however, even the dialysis stopped working. A kidney transplant seemed to be the only option to save Daly’s life. He was put on a donor list.

Dr. Chintalapati Varma, Director of Transplant Surgery at Geisinger Medical Center, said that performing the surgery on such a young child was “very risky” and a “major operation.” Although there were many risks involved, doctors at the hospital knew the transplant was the family’s last resort.

It was then that Daly’s mother Ingrid agreed to do something that would make her proud for the rest of her life. When doctors realized that Ingrid was a perfect match for Daly’s kidney transplant, she immediately agreed. Soon after the decision was made, doctors performed the risky surgery on the mother and son, making Daly the youngest child to receive a kidney transplant at Janet Weis Children’s Hospital.

The procedure went very well. Ingrid spent three days in the hospital after surgery; Daly spent five. The mother spent most of her time in the hospital with her son for the next two days until his discharge. Both seemed to be doing well and were making miraculous improvements. During time periods spent at the hospital, the Lucianos talk enthusiastically about the excellent care their son received.

“Geisinger changed our son’s life,” Omar added. “The staff met every need he had, and if they didn’t have it, they got it.”

“They treated us like we were in their house and my son was part of their family”, Ingrid said.
Daly and his mother were soon back at home recovering from the transplant. Although the recovery is never easy, the two got through it together, making improvements every day. When asked about the huge decision she made in regard to her son, Ingrid couldn’t be more happy or proud. In fact, Ingrid’s face lights up every time she discusses the decision she made.

Today, Daly is healthy and energetic. Staff members at the hospital offer their comments on Daly’s drastic improvements.

“Daly continues to amaze us with the progress that he has made since his transplant,” said Barbara Leauber, physician assistant pediatric nephrology. “He is now on minimal medications that he will need to take the rest of his life to prevent rejection of his transplant. He is a happy, healthy, thriving boy in all aspects.”
Although Daly receives regular checkups, his doctors say he has a positive future and Dr. Varma is thrilled to have been a part of such a life-changing transplant.
“Daly loves coming into the clinic and chatting with nurses,” Dr. Varma said. “One of the greatest joys I’ve had is seeing him run around our clinic after having the transplant. It’s just so amazing how much energy he has now. It is so gratifying as a transplant surgeon to be able to have been a part of Daly’s surgery.”