A ground-breaking heart and lungsurgery gives little Leen a new life
A ground-breaking heartand lung surgery giveslittle Leen a new life
Fresh start:
Seven-year-old Leen Mohammed Hussain Homadi couldn’t run, couldn’t ride a bike, couldn’t play with her friends. At home in Saudi Arabia, Leen didn’t have a childhood like other kids. She was left exhausted after the slightest exertion. “She was not like a typical child,” Mohammed Hussain Homadi, her father, said. “She did not have a normal life.”
Leen was born with an exceptionally complex and particularly severe congenital heart condition known as Tetralogy of Fallot (TOF) with pulmonary atresia. Tetralogy of Fallot is not a single defect, but a combination of four structural problems in the heart that occur together, interfering with how blood flows through the body. Leen’s case was an especially rare one: In her heart, the valve and arteries that normally carry blood to the lungs never formed. Without a direct pathway for blood to reach her lungs, her body had created abnormal backup vessels — called major aortopulmonary collateral arteries, or MAPCAs — to survive. These fragile back-up blood vessels were never meant to do the work of full-sized pulmonary arteries. Consequently, Leen’s lungs were underdeveloped, and her body was chronically starved of oxygen, which left her with debilitating fatigue. She was breathless after walking just a tenth of a mile. Her low oxygen levels also led to cyanosis, or discoloration; her skin, lips and fingernails turned a pale hue of blue.
Leen’s family sought care in their native Saudi Arabia, moving from their home in the northern part of the country to the nation’s capital, Riyadh, for access to the nation’s top hospitals and doctors. A surgery in 2023 didn’t cure Leen. The family was told there was nothing more Riyadh’s doctors could do. That’s when the Saudi government arranged for the family to travel abroad for care. The Homadis considered the UK, ultimately chose the U.S., and landed an evaluation at one U.S. hospital, but Leen was too small, and surgeries of this kind were too complex and too high risk for the teams that evaluated her. There was, however, one U.S. healthcare provider that might be able to help Leen: Stanford Medicine Children’s Health, home to one of the world’s leading pediatric heart centers, as well as a world-class lung and heart-lung transplant program. Lucile Packard Children’s Hospital Stanford, the center of Stanford Medicine Children’s Health, is known for its teams’ specialty and world-class multidisciplinary coordinated care.
A glimmer
of hope
But when the Homadis arrived at Stanford Children’s, the Pulmonary Artery Reconstruction Program (PAR) team determined that Leen was not a good pulmonary artery surgical candidate.
“We saw all the [previous] investigations [from the patient’s earlier treatments]. Then we discussed this patient in our Pulmonary Artery Reconstruction Program meeting where our multidisciplinary team — our cardiothoracic surgery team, our cardiac catheterization team, our ICU team — sat together, and we reevaluated,“ said leading cardiothoracic (heart and chest) surgeon Dr. Arvind Bishnoi, who specializes in complex pediatric cardiothoracic surgeries, one of a number of heart surgeons at Stanford Children’s who deals with PAR. “We did not see any real targets for reconstruction in her lungs; she had lost most of her lung blood supply.”
“...Her oxygen saturations were in 60%, 65% with very high oxygen demand. She was not able to walk...”
Leen was then evaluated by Dr. Cissy (Xin) Si, the medical director of the Pediatric Lung and Heart-Lung Transplant Program at Stanford Children’s, and the multidisciplinary lung/heart-lung transplant team to determine if a lung transplant was a good option. “Her lung tissue itself was completely healthy,” Dr. Si said, “but there was pretty much no blood flow to the right lung and there was limited blood flow to the left lung.” Most urgently, the team determined that Leen had less than a 50 percent chance of living to her 10th birthday. Given the severity of Leen’s condition, the surgical and medical teams agreed she was a good candidate for a transplant, either heart and lungs both, or lungs alone.
The high-stakes decision of which of these two options was best, however, was a discussion for the team at Stanford Children’s. Collectively, the team did decide to list Leen for both possible transplant scenarios: a lung and heart transplant together, or — if a set of donor heart and lungs together didn’t become available soon enough — a lung transplant. In the latter case, Dr. Bishnoi and team would remove Leen’s lungs, repair her heart and then place in the new lungs, all in the same 10- to 12-hour procedure. The more Leen’s condition deteriorated, the more complexities could arise in her surgery and recovery. She needed an operation as soon as possible: the lung-only transplant would likely be possible months sooner. But due to consistently poor outcomes, this procedure hadn’t been attempted in pediatric care in nearly two decades.
A ground-
breaking plan
“We need each and every person on our team to perform this kind of work,” he said. “If you put me in some other institute, probably I would not be able to deliver the same outcome.”
The heart-repair-and-lung-transplant procedure being considered for Leen was first developed nearly 30 years ago. But the matter is that the abnormal blood vessels — the MAPCAs — travel variably and unpredictably through the chest, Dr. Bishnoi explained, and this “element of surprise” for surgeons new to working with them is what led to the procedure’s persistently adverse results. In short time, hospitals stopped performing it, determining that it was not effective.
This left children like Leen with no further options. But the heart team at Stanford Children’s had amassed over two decades of experience with these MAPCAs since that time, and they are world leaders in PAR procedures. On top of these advantages, they had seen nearly two decades of technological advances since the dual pediatric heart repair and lung transplant was first attempted. Bishnoi suspected that this specific heart-repair-and-lung-transplant procedure — and the hope it offered — could make a comeback. Dr. Bishnoi’s team reviewed the research and documentation available about the procedure and felt they were uniquely positioned to make this surgery work. “Surgical expertise and outcomes are incremental, and we build it over time,” Dr. Bishnoi said.
“Leen was a spunky kid. She wanted to run around. She was showing me her dolls...had names for all of her dolls... she was wanting to bargain with me as to when can she go to Saudi Arabia to get her sister to come with her.
Fixing Leen’s
heart and lungs
Surgery prep would begin that very day with Dr. Bishnoi and Dr. Michael Ma - the chief of heart surgery at Stanford Medicine Children’s Health.
On the day of the surgery, the entire care team rallied around the family. “One of the nurses…said, ‘After I put you in the room, I will go and pray for you,’” Mohammed recalls of the day of the surgery. “It was really exceptional…She's from a different faith, maybe, but that was a beautiful feeling and expression.”
“When my daughter was going to the operating room, she kept saying that I will go to pray and ask God to help her and take care of her. I felt the mercy and the concern from her.”
The team was confident — but they were also acutely aware that they needed to be “quick and safe,” Dr. Bishnoi said. First, Drs. Bishnoi and Ma explanted her lungs, temporarily stopped Leen’s heart and performed the intracardiac repair, closing a large hole called a ventricular septal defect and reconstructing the pathway from the right ventricle that would soon connect to Leen’s new lungs. Then they placed in the donor lungs. Just over 10 hours later, Leen was recovering in intensive care, with the cardiac and ICU teams in close coordination.
For patients like Leen, the most precarious period often begins after surgery. Leen was transferred to the cardiovascular intensive care unit (CVICU) at Stanford Children’s and her progress was cautious but encouraging. Her breathing tube was removed within a day — an early sign that her new lungs were functioning. Her oxygen levels, once chronically low, began to normalize. For the first time in her life, her body was receiving the oxygen it needed. Her parents saw the difference in Leen’s coloring immediately.
The road
to recovery
coordination across disciplines.
“It’s complicated to have the postoperative intracardiac issues coupled with the impact of a postoperative lung transplant, because some of those postoperative concerns are at odds with each other,” said Rebecca Kameny, MD, clinical associate professor, critical care medicine specialist in Stanford Children's pediatric CVICU. She and Si’s team worked closely on the best response to a complex set of needs.
Leen’s recovery wasn’t wholly uneventful. She developed a heart block — a disruption of the heart’s electrical signaling that can slow or stop normal heartbeats — that sometimes occurs after a surgery like a Tetralogy of Fallot cardiac repair. Leen underwent a sternotomy to receive a pacemaker. But from there, things were progressively easier for her. Throughout it all, teams from different specialties remained closely involved. Cardiothoracic surgeons consulted with intensivists. Transplant pulmonologists weighed in on cardiac decisions. Cardiologists adjusted plans based on lung function. Care was recalibrated daily, sometimes hourly, as Leen’s body responded.
“None of this is cookie cutter off-the-shelf management,” Dr. Kameny added. “That’s one of the strengths of our team: bringing all of that expertise to bear in the day-to-day care.”
The expertise, cooperation and collaboration these surgeries require can only come from the experience the team has amassed across many complex cases and many years, Dr. Bishnoi added. “We need each and every person of our team to perform this kind of work,” he said. “If you put me in some other institution, probably I would not be able to deliver the same outcome.”
“The staff and the nurses—they are very friendly, very supportive, very helpful…. Even if I keep thanking them all my life, maybe it’s not enough.”
After two months in the hospital, Leen checked out of Stanford Children’s. “Kids display an ‘X factor’ that shows they’re really getting better. Sometimes they’ll be a little mischievous and make jokes or something,” said Dr. Kameny. “With Leen, it was definitely her sweet little smile coming through. You could see she was chatting with her parents in a different way. That’s always when you take this sigh of relief as the doc in charge of her care, like: ‘She’s starting to turn the corner here.’”
Today, Leen is recovering near Stanford Children’s, where her family will stay at least a year receiving continuous and attentive follow-up care. “Thank God, she starts to live her normal life and play and ride [like] other children,” Homadi said of his daughter. “She is doing well. She grows, and studies and lives her life normally.” He’s grateful, he said, to the team at Stanford Children’s: “The staff and the nurses—they are very friendly, very supportive, very helpful…. Even if I keep thanking them all my life, maybe it’s not enough.”
As for Leen, the future is full of possibility now. When her dad asks her what she wants to be when she grows up, she says, “A kindergarten teacher.”
Life-saving treatment for other children
““...I saved Leen, but I saved one heart for another kid somewhere in the country...”Leen is the first patient that we have successfully brought through lung transplantation for this underlying congenital heart disease.”
As Leen lives a new, more complete life, the team has already accepted new patients who need this same operation — a lung transplant with heart repair.
“We have shown that it can be done,” Dr. Bishnoi said, adding that repairing the heart along with a lung transplant means patients won’t wait as long on a donor list, and they won’t have to overcome the additional challenges that can come with heart and lung transplant. This procedure means there’s now another option for long-term survival when all other surgical options fail. “This has opened a new door to us,” said Dr. Bishnoi.
