Chilean Families Travel to Children's for Life-Changing Care
One-year-old Diego Marquez Zapata is a plump-cheeked baby who is easily coaxed into a grin. His mother, Paulina, is attentive and doting, eager to meet her son's every need. They both live in a rural region outside the metropolitan area of Concepción, Chile.
Diego was born with a condition called bilateral hydronephrosis, where urine is unable to drain from the kidney down the ureters into the bladder. This disease can lead to kidney damage and tissue scarring (nephropathy) if improperly treated. Diego began treatment for his condition in Chile as soon as he was born. A corrective procedure was planned but Mother Nature interfered.
Mother Nature changes plans
An 8.8 magnitude earthquake struck the country in February and triggered a powerful tsunami, wiping out much of the infrastructure of Chile's second largest city, Concepción, and devastating many other areas.
The pediatric hospital where Diego was to have the surgery was damaged by the tsunami and doctors there informed Paulina it could be as long as two years before they would be able to accommodate Diego in the Chilean health system.
"Perhaps, due to his age, he is not able to notice anything, but without the operation the kidney could have been compromised and that would have changed his future," Paulina said.
Diego wasn't the only child in need of surgical intervention. Several other children in the area were identified with urologic conditions requiring surgery - and four of those children's' conditions were the most severe. None of the families were financially able to find another hospital to perform the surgeries.
Local humanitarian steps in
When Denver humanitarian, Dan Spicer, heard of the need, he contacted Children's Hospital Colorado with a request to bring the five children to Children's to receive the surgeries. Children's is committed to improving the lives of children and routinely provides charity care to Americans and foreign children each year.
Spicer worked with American Airlines who donated roundtrip fares for the children and their mothers from Concepción to Denver. Jerrod Milton, vice president of Operations at Children's, assembled an internal team of care providers who coordinated logistical elements of the hospital visit for these children.
"This was a great opportunity for many of our team members to do something truly extraordinary," Milton said. "To my knowledge, this is the largest international group of kids we have ever simultaneously brought to Children's for charity care."
Duncan Wilcox, MBBS, MD, Ponzio Family Chair in Pediatric Urology, agreed to perform the surgeries at no cost. Many other voluntary medical staff providers from supportive services collaborated to care for the needs of these patients. Other staff members stepped in to provide various forms of logistical support services.
"If the surgeries could be arranged and we could do it, it was the appropriate thing to do," Dr. Wilcox said.
From Chile to Children's
In October, the five children - ranging in age from 11 months old to 12-years-old - arrived with their mothers and one with his grandmother. They all stayed at the Ronald McDonald House during the duration of their trip to Colorado. Lily Jimenez, a Chilean humanitarian and interpreter agreed to chaperone the children and their families and help to guide them safely to Children's and serve as a family liaison during their visit.
Stephen Renca-Alarconage, age 12, also came to Children's to have urologic surgery. His condition was similar to Diego's except that one kidney was affected.
"He couldn't have a normal routine because every time he started with normal activities like playing soccer he started being in pain," said his mother, Karina.
Surgical intervention brings freedom
For Marjorie Mendez Toro, the surgery to repair her daughter, Nefertiti's left duplex kidney meant freedom. Nefertiti's condition caused her to leak urine constantly. It would have been impossible for her to be potty trained and transition from diapers, which caused a financial burden on the family.
"By her being healthy, I will be able to study and give her a better quality of life, and I will also be able to give her a better education, said Nefertiti's mother, Marjorie.
Two of the other children had more complex conditions but were candidates for laparoscopic surgery at Children's. Due to privacy requests, we are unable to provide more information about them.
Following successful surgeries, the children recovered at the Ronald McDonald House until they were well enough to return to Chile in early November.
The families were impressed by the concept of family-centered care at Children's, and were relieved to be able to communicate through hospital interpreters and Spanish-speaking nurses.
"When I wanted to express my thankfulness, I was allowed to hug [Dr. Wilcox] and thank him," Marjorie said."Lily told us that this hospital was one of the best hospitals in America and had some of the best doctors in the world, and that our children would receive the best care."
The families also expressed their gratitude for the life-changing opportunity.
"Thank you for the wonderful opportunity this hospital has given to us for operating on our children with the best doctors in the whole world," Paulina said." Thank you for treating us so well and for all the attention we have received. Personally, this experience is going to change our life."
Nefertiti's mother added, "My lifetime will not be enough to thank them and be grateful."
Milton expressed that the experience revived his spirit and reconnected him to the hospital's purpose and mission of patient care.
"It has reaffirmed the value of our mission and helped me realize that improving the health of children has no boundaries."
