Up and Running Again, With Heart

Roza Saad’s new heart and lungs put her back on track

Four years ago, then-11-year-old Roza Saad was struggling in her Southern California physical education class. All the students were assigned to try to run a mile in under 12 minutes. She was determined to succeed, but she simply couldn’t finish the course. When she told her parents, knowing the problem was not her lack of resolve, they visited a pediatrician, who, unable to find anything obvious wrong, gave Roza an inhaler, thinking maybe the problem was asthma. Back at school again, “Roza continued really pushing herself. She was getting out of breath and really tired but still couldn’t make the time of 12 minutes,” says Baydaa, Roza’s mother.

In early 2019, feeling that something more fundamental was amiss, Baydaa brought Roza back to the pediatrician and asked for an echocardiogram of Roza’s heart. The test confirmed Baydaa’s fears: Something was profoundly wrong. The blood pressure in Roza’s heart was far higher than normal. That test prompted another, called a right-heart catheterization, in which a more precise pressure measurement is taken through a catheter inserted into the pulmonary artery. The finding: Roza had severe pulmonary arterial hypertension (PAH), which meant that her pulmonary blood pressure was much higher than the blood pressure in the rest of her body. It is a condition that, if left untreated, could dramatically shorten Roza’s life. Although her hypertension initially responded to drugs, it reasserted itself, and her pulmonary blood pressure crept so high that in early 2020 her alarmed Southern California doctors prescribed a lung biopsy.

Like a bad dream

Roza and her parents knew there were risks associated with a lung biopsy, but they didn’t expect what happened that day. The surgery, which requires a small incision in the chest wall, through which a sample of lung tissue is removed for study, turned catastrophic. Roza’s lungs were so severely affected that after the biopsy was taken, her lungs hemorrhaged, making it hard to breathe. The stress on Roza’s already-compromised heart was too great, and it was necessary to put her on an extracorporeal membrane oxygenation (ECMO) machine, an external artificial heart and lung bypass machine, to save her. ECMO kept her alive by circulating artificially oxygenated blood around her body. Roza had to be mechanically ventilated, so she was also intubated and heavily sedated.

“It was unreal,” says Baydaa. “Like a very bad dream.’

Baydaa and her husband, Shakir, didn’t emerge from that nightmare for many weeks. Her Southern California doctors immediately sought a hospital with the experience, technology, and willingness to take on such a difficult case. Of the pediatric centers they considered, only Lucile Packard Children’s Hospital Stanford, renowned for its transplantation program and for accepting and successfully treating the toughest cases, was willing and able to take on Roza’s.

That she would be going into transplantation already on ECMO made Roza an especially challenging patient, says Michael Ma, MD, surgical director of the Pediatric Lung and Heart-Lung Transplant program. “But the Pediatric Transplant Center does not shy away from difficult cases; we throw ourselves into them,” he says.

A new start

Roza was flown to Stanford Medicine Children’s Health from Southern California in a fixed-wing air ambulance. Although her doctors here knew they’d probably need to find a new pair of lungs for Roza, no one could know how long that would take. “Lung transplants for people Roza’s age are rare; probably fewer than 100 every year occur worldwide,” says Carol Conrad, MD, medical director of the Lucile Packard Children’s Hospital Stanford Pediatric Lung and Heart-Lung Transplant program. The wait time for donor lungs averages many months and can sometimes be years. This posed a serious dilemma for Roza, because her native lungs and heart could not support her on their own, and staying on ECMO for long is perilous. “ECMO isn’t designed to be implemented for more than a week or two; definitely not for months or years. So, we worried about getting Roza new organs in time to save her life,” says Dr. Ma, the lead surgeon on Roza’s case.

On Sept. 23, 2020, Roza, after just a couple of days at Stanford Medicine Children’s Health, was put on the organ transplant waiting list. Ideally, because her lungs and her heart were in very bad shape, she would have a chance to replace both. The team was exploring all options, though, says Dr. Ma. “We were debating: If a compatible pair of lungs alone become available, should we take them for Roza? On the one hand, because Roza was already on ECMO, we were just so pressed for time,” he says. “But, on the other, if we replaced only Roza’s lungs, the chances were pretty high that her heart would be too damaged to recover, leaving her needing another major transplant not far down the road.”

One day in the fourth week of September, tensions were running high, says Dr. Ma. But halfway through a debate about whether to accept an offer for just lungs, a call came in from the organ procurement organization (OPO) saying they had both lungs and a heart, all in one piece, or en bloc, as it is called when a donor’s heart and lungs are removed and transplanted together.

“We were all aware that a transplant was the only thing that could save Roza. Suddenly we could offer it,” says Dr. Ma. “It was thrilling to tell Roza’s family, ‘We can do this now. The en-bloc heart-lung offer is here. It’s time!’” he says.

“It was like a miracle for them to find a donor so fast,” says Baydaa.

Double transplant

Orchestrating a transplant surgery is a challenge. Two full surgical teams are involved—one at the hospital where the donor is (to protect the donor’s confidentiality, even the hospital location may not be disclosed) and the other, led by Dr. Ma, at the recipient’s location. Without blood flowing through them, lungs or an en-bloc heart-lung can survive only six hours out of the body, so although these two surgeries often occur hundreds of miles apart, they must be precisely synchronized. When the recipient’s damaged old organs are removed, the new ones should just be arriving in the OR with the procurement surgical team.

Roza’s 12-hour-long surgery began Sept. 25 and was complete the morning of Sept. 26. It went smoothly and according to plan. She was removed from ECMO and placed on bypass, an ECMO-like artificial external heart-and-lung machine in the OR. The heart and lungs were removed en bloc from the deceased donor and flown to Stanford, arriving just as Dr. Ma’s team was finishing the removal of Roza’s old heart and lungs. He then fitted the new organs into Roza’s chest and hooked them up. “Everything was timed precisely, and the new organs fit perfectly,” says Dr. Ma. Once things were in place, Roza was taken off bypass and her new heart began circulating blood on its own.

After the surgery, once her new lungs and heart were fully operational, and after her breathing tube and anesthesia were removed, Roza could communicate again for the first time since her biopsy on Sept. 3. When she fully came to, Roza learned that while she was sedated, it had been discovered that she was gravely ill; her heart and lungs had been replaced; and she could now look forward to a new, much more active and healthy life. It was a lot to take in.

She wasn’t quite out of the woods yet. Although the surgery had gone well, following it, Roza had a negative reaction to her anti-rejection medicines and her gastrointestinal tract pretty much shut down. “Her stomach and intestines had the most extreme reaction I’d ever seen to the immune-suppression medications she had to be on,” says Dr. Conrad. “Once we were able to find medicines that didn’t cause her nausea and horrid abdominal pain, though, Roza stepped right up to the plate,” she adds.

By the time she went home on Feb. 19, 2021, Roza was like a part of the family. “We all loved her and admired how hard she was working to find her way forward. I won’t say we were sad to see her go—we were happy to see her go home stable, energetic, and full of smiles, gratitude, and hope—but we certainly do miss her,” says Laura Green, nurse coordinator of the Lung and Heart-Lung Transplant program.

Back on track

Because of COVID-19, Roza attends school by Zoom now. But she’ll start ninth grade next year in person, and she loves hanging out and watching movies with her older sister and playing with her baby brother. “She always has a big smile,” says her mom. And she’s getting to know her vital new heart and lungs, partly by working out to YouTube training videos. She’s getting stronger all the time and looks forward to the day when she can take another shot at the mile.