The Ocampos knew before their first son was born that he would need to be monitored for kidney problems, but they never dreamed that both he and their second son – born seemingly healthy – would require kidney transplants.
Cisco and Cora Ocampo discovered that their son Luke’s kidneys were underdeveloped during a routine ultrasound. After he was born, the nephrology team at Levine Children’s Hospital immediately began monitoring him for any issues that could develop.
“We made friends that were being seen by nephrology and that was very encouraging,” Cora said. “One family took us under their wing. Seeing their child doing so well gave us hope.”
Two years later, the Ocampos welcomed their second son Jordan. However, while he seemed perfectly healthy, Cora noticed some behavioral differences between Jordan and Luke.
“When we’d take him to the nursery at church, he was so clingy. He didn’t want to be away from me or Cisco,” she said. “But, we thought maybe his personality was just different from Luke’s.”
At Jordan’s one-year check-up, his pediatrician discovered that his weight had plateaued. The doctor wasn’t overly concerned, but decided to do some lab work to rule out anything serious. Unfortunately, when the tests came back, they revealed that Jordan was in kidney failure.
“We were in shock,” Cora said. “We thought, ‘What? Kidney failure? This is not happening. We know what kidney problems look like.’”
Jordan immediately began treatment and spent the next two years on dialysis, but on Christmas Eve 2012, he received the gift he’d been waiting for.
“We had been waiting for that moment and when it happened, I thought, ‘No!’ I panicked. We had gotten so used to dialysis,” said Cora, though Cisco didn’t feel the same. “I never got used to dialysis,” he said. “We had surrendered to the routine, but I was ready for it to be over.”
What they do agree on: “It was a Christmas miracle.”
Ten months after Jordan’s transplant, his brother Luke reached a tipping point. “The doctor said, ‘You have a choice. You can either go through the same process as Jordan – dialysis and then transplant – or you can put him on the transplant list now,’” Cora said.
After discussion and prayer, they decided to skip dialysis and plan for a transplant.
“That was a leap of faith for us because there was a chance that he could improve with dialysis and not need the transplant,” Cisco said. “But, we knew that the doctors wanted the best outcome for our children.”
When Luke was put on the transplant list, his doctor, pediatric nephrologist Susan Massengill, MD, made a point to see him every month. As he waited, Luke’s parents noticed his energy waning and that he wasn’t able to do things he used to love – like reading and playing with his brother.
There was a potential donor on Easter 2014 and a potential donor on Memorial Day 2014. But it wasn’t until Independence Day 2014 that the right donor for Luke was found.
“We really appreciated them telling us how meticulous they were in choosing the right donor kidneys for the transplants,” Cisco said. “That gave us a lot of peace.”
July 3, 2014, Luke was at a regular appointment when the doctor received a phone call telling her that the right donor had been found. Being able to share the good news face-to-face with the patient was a first for Dr. Massengill, who usually shares the news over the phone. Dr. Massengill asked Luke directly if he was ready for his transplant and the surgery took place the next day.
Both boys continue to be monitored by the nephrology team, and the team does shared appointments for Luke and Jordan, so the Ocampos only have to make one trip.
“Nephrology has been like our family. They accepted, they treated us, they helped us,” Cora said. From social workers to the lab to the phlebotomist, the whole family, they were very sweet to us.”
Now 5 and 8 years old, respectively, Jordan and Luke show no signs of the low energy or shyness that plagued them before their surgeries.
“Jordan has two modes: on and off,” Cisco said. “They’re taking piano lessons. They’re into swimming and they love sports.”
“They’re hyper now that they’re done with transplant. They love to explore and they love to go to museums. They love going to church,” Cora said. “I hope that, as they grow, they’ll appreciate the lives that they have and that they do something special with them.”