Merced 1-year-old lives ‘hour to hour’ awaiting a kidney transplant

When Dezi Padilla was 33 weeks pregnant, she had an emergency cesarean section, the umbilical cord was wrapped around her baby’s neck, and soon after he was pronounced dead.

Doctors resuscitated baby Jayce Valencia and, about 30 minutes later, his mother says, his heart started beating on its own again. But his kidneys failed and he’s been on the list for a kidney transplant since his birth.

“It felt like a nightmare,” the 34-year-old Padilla said.

Donor Network West, a federally designated organ-procurement organization covering Northern California and Nevada, reported 2,287 kidney transplants done in California last year, with 97 of those performed on people under age 18.

“The kidney is an extremely important organ in the body,” said Waldo Concepcion, the chief of pediatric kidney transplantation at Lucile Packard Children’s Hospital Stanford. “They help the body develop all the functions for growth of the bones.”

Without functioning kidneys, there is no way for the body to keep levels of electrolytes or make hormones that create red blood cells, contribute to strong bones and regulate blood pressure.

“When you don’t have a kidney working, your blood has a lot of toxins,” Concepcion said. “The kidney has a little involvement in other organs. When the kidney’s not working well, a lot of other things are happening.”

The toxic substances the diseased kidneys aren’t able to filter out, Concepcion said, can result in low energy, high blood pressure and a delay of growth.

Concepcion, one of Jayce’s doctors, said these all are reasons Jayce hasn’t started crawling or walking.

Individuals such as Jayce, with end-stage kidney disease, either need to be on dialysis, a machine that assists the kidney with daily functions, or have a kidney transplant to survive, according to the Mayo Clinic.

“We live hour to hour with this baby,” Padilla said. “I had to quit my job to take care of my son. You wouldn’t know he was sick until you lift up his shirt.”

To survive, Jayce needs to be hooked up to dialysis 14 hours a day and to a feeding pump 20 hours a day, Padilla said. In addition, Jayce takes up to 16 medications a day and travels to Valley Children’s Hospital in Madera two to three times a month for checkups.

Although kidney disease affects adults just as much as children, Concepcion said, the disease is found to be more severe for children. One of the main reasons is that children are growing and developing, he said, something kidney failure stops the body from doing.

For instance, Padilla said, Jayce is a 17-month-old baby but he’s six to seven months behind developmentally.

Since adults have already grown and developed, Concepcion said, they have the ability to withstand dialysis longer.

“Time on dialysis is a lot more lethal to a child,” Concepcion said.

According to the American Transplant Foundation, a nonprofit aiming to improve the availability of human transplant organs, 22 people die every day waiting for a liver or a kidney. These organs can be donated by a living person, and if 1 in 2,000 people donated a kidney or liver there wouldn’t be anyone on the transplant list.

“Having a living donor would be way more beneficial because being on the list, it could be years,” Padilla said.

In Merced County, 68,350 people are registered as organ and tissue donors, reports Donor Network West.

“Just the fact that you have the desire to donate is just fantastic,” Concepcion said. “It’s the best example of what a community caring for their own people is.”

If Jayce receives a kidney, the battle isn’t over, Padilla said. Although he wouldn’t be hooked up to a feeding pump or monitors most of the day, he would still have to be on medication for the rest of his life to ensure his body won’t reject the kidneys.

“Dialysis saves his life but does just enough to keep him going,” Padilla said. “Right now I’m very blessed and thankful that dialysis has worked for him and keeps him alive.”

To raise funds for Jayce’s medical bills, Padilla has an account with a fundraising assistance organization, the Children’s Organ Transplant Association. Individuals can donate at cotaforjaycev.com.

On Tuesday, Padilla will have a fundraiser at Panera Bread on 3110 R Street in Merced from 4 to 8 p.m. When purchasing meals, individuals can show the cashier a flier (on mobile devices is OK) found on Jayce’s Facebook page, and part of the proceeds will go toward the boy’s medical expenses.

On Feb. 11, Padilla is to have a pancake breakfast fundraiser at Applebee’s on Olive Avenue in Merced from 8 to 9:45 a.m. The breakfast includes pancakes, bacon and beverages for $6. To purchase tickets, individuals can message Padilla through her son’s Facebook page at m.facebook.com/strongjayce.

This story was originally published January 15, 2017 at 3:23 PM with the headline "Merced 1-year-old lives ‘hour to hour’ awaiting a kidney transplant."