Siblings with double-lung transplants beat the odds

Brother and sister David and Doris Diaz attend the 2017 Packard Children’s prom

When 9-year-old David Diaz was wheeled into surgery for a double-lung transplant in March 2017, he had an advantage almost no one in his situation has: his older sister had gone through the same rare surgery just three years earlier.

“She told him, ‘David, don’t be scared. I’ve been through this and you don’t feel pain or anything. They give you medicine so you can go to sleep,’” recalls their mother, Corina. “She was a very big help to him and answered all his questions.”

David’s big sister, Doris, now 11, was diagnosed with cystic fibrosis (CF) in 2006, when she was 6 months old. Two and a half years after her diagnosis, one-month-old David was also diagnosed with CF. Their parents, Corina and David, became experts in the daily home care their children required, from medications to airway clearance to making regular doctor’s visits with the pulmonology team at Lucile Packard Children’s Hospital Stanford.

“Both of these kids had very severe cystic fibrosis,” says Carol Conrad, MD, medical director of the Pediatric Lung and Heart-Lung Transplantation Program and Pediatric Pulmonary Function Lab at the hospital. “Despite thorough and adequate treatment at home, and despite everybody’s best efforts, they both developed end-stage lung disease quite early in life.”

Doris was 8 years old when she had her double-lung transplant at Lucile Packard Children’s Hospital Stanford in June 2014. Double lung transplants are very rare surgeries in pediatric patients. Lucile Packard Children’s Hospital Stanford is the only pediatric lung and heart-lung transplant program on the West Coast, and yet has performed just over 25 pediatric double lung transplants since 1989.

Doris Diaz with Dr. Carol Conrad shortly after her double lung transplant surgery in 2014

At the same time Doris’s family was celebrating her successful surgery and quick recovery, her little brother David’s health was declining rapidly. David’s pulmonologist, Carlos Milla, MD, associate professor of pediatric pulmonary medicine at Stanford University School of Medicine, kept a close eye on David’s case as his parents continued providing home care as long as they could.

“When David would cough, or his lips would turn purple, or when he started to cry, Doris was scared,” recalls Corina. “She would say to me, ‘Every day he seems worse than me.’ But to David, she said, ‘David please be faithful. Remember how I looked before? Look at me now.’”

In late 2016, David was admitted to Lucile Packard Children’s Hospital Stanford, where he was hospitalized for two months. He needed around-the-clock oxygen and the support of a bi-level positive airway pressure (BiPAP) machine. Katsuhide “Kats” Maeda, MD, clinical associate professor of cardiothoracic surgery at the School of Medicine, sat with Dr. Milla in the Pediatric Intensive Care Unit as they examined David’s chest X-ray.

David prior to his double lung transplant surgery in 2017

Although David clearly needed an intervention, the decision to do a lung transplant was not an easy one. “His right lung was completely collapsed and not working at all,” said Dr. Maeda. “He was surviving only with his left lung, which was also very sick and had expanded, pushing his heart to the other side of his chest.”

When it comes to transplants, doctors must carefully consider whether the patient could be too sick to survive the procedure, in which case the rare, much-needed donor lungs — which most pediatric patients wait a year or more for — should be allocated to another patient. Dr. Maeda had done Doris’s high-risk, double-lung transplant, as well as several others. But David, according to Dr. Conrad, “was much higher risk than Doris was, or anybody we’ve ever known.”

David’s doctors knew he had no other options. Lucile Packard Children’s Hospital Stanford performs more organ transplants than any other children’s hospital in the nation. “I knew that if I said no, David would have nowhere to go,” says Dr. Maeda. “And most likely, he would have died within a year without transplant.”

Dr. Milla and Dr. Maeda weighed the risks and benefits. “Then, finally,” says Dr. Maeda, “We decided to accept him as a transplant candidate.”

In mid-January, David’s doctors put him on the national organ transplant waiting list, escalating his status based on his rapidly deteriorating health. “With Doris, we waited one year for a donor,” says Corina. “I thought, how can I stay another year at the hospital?”

Then, in March, a surprise came. “David was in the hospital when we got the call saying, ‘We’ve got the donor for David,’” says Corina. “He was so happy. When the doctor told him the news, he started crying.”

Going into surgery, “David looked more comfortable than other patients,” says Dr. Maeda, “because he knew his sister had done the same surgery and she was doing just fine.”

David’s surgery began at 7 pm in the evening, and lasted 12 hours. “It was exactly as I expected when I opened up his chest,” remembers Dr. Maeda. “But every time we started dissecting the right lung, we lost blood pressure, and David became very hemodynamically unstable [unstable blood pressure]. So we had to use the cardiopulmonary bypass machine, even for the lung dissection. After that was completed, we pushed his heart back into normal position and put in the two new, healthy lungs. And, luckily, those two lungs functioned very well.”

Dr. Conrad had advised David’s parents not to expect David’s recovery to be as rapid as Doris’s had been. “I just didn’t expect that to happen with David,” she says. “But Dr. Maeda is such an amazing surgeon, he has such excellent technique, and he’s so fast. And David was amazing, just the perfect little patient. He had been listening very hard to what he needed to do prior to surgery, and afterwards he just set out to get better. And he did great.”

David’s recovery was remarkable given how fragile he had been just days before. His breathing tube was removed within 24 hours of the surgery, and he was discharged from the hospital within two weeks. A week after discharge, he was playing soccer with other kids at the Ronald McDonald House at Stanford, where his family is staying until June to be close by during his follow-up care. “This house is like another home for me,” says Corina. “They help me with everything, and I don’t have to worry about anything because they provide everything for us. This is another big help for my family.”

Today, David’s mom says that with his two new lungs, he’s like a new kid. “I see my kids healthy and playing like normal kids, which is something amazing,” says Corina. “It’s funny, sometimes it’s 8 or 9 o’clock at night, and David still wants to kick the ball around.”

David is all smiles just days after receiving his new lungs

“Both David and Doris have had zero complications with rejection or with any graft dysfunction after their transplants, so that’s a really good foot ahead,” says Dr. Conrad. “So their prognosis is very good. We have many post-transplant patients who are 10, 12, 13 years out with normal graft function. So, I’m just going to put them in that category for now. I think they’ll do great.”

David is serving as the 2017 Summer Scamper Patient Hero for the Pulmonary, Asthma & Sleep Medicine Center. Join our largest community fundraiser of the year, and watch David and your other 2017 Patient Heroes count down to the start of the Summer Scamper race on June 25 on the Stanford campus. Read more about the Summer Scamper Patient Heroes, and register to walk, run or volunteer at SummerScamper.org.