New Lungs Give Young Girl Her Laugh Back

If you meet 7-year-old Sadie Jackson, the first thing you’ll hear is her laugh. Her mom, Carrie, calls her a “giggler.” It’s full of life and bright, and will bring anyone who hears it joy. But a sudden onset of symptoms and a rare, progressive lung disease took away that giggle.

“It got to the point where even laughter would make her sick,” Carrie remembers. “It broke my heart when she would laugh and then start feeling unwell. That was so awful.”

In September 2022, when they were living in Southern California, the family was with friends at the zoo, and Sadie’s stomach started to hurt. She was panting and coughing and couldn’t walk the rest of the way to the car.

“What we came to learn was that was a pulmonary hypertensive crisis,” Carrie says. “From that point on, she had a crisis every couple of days. She would progressively get worse, so she would thrash about, couldn’t breathe, and turn pale, sweaty, and clammy. Once everything relaxed, she would be back to normal.”

After many doctors’ visits, 911 calls, and emergency room trips, it was still unclear exactly what she had until she was admitted to a local children’s hospital. The very next morning, Sadie had another crisis.

“I’m a nurse,” Carrie says. “That was the first time I’d seen it on the monitor, so I knew it was bad. I just thought there had to have been angels around us while we were at home.”

Her pulmonary hypertensive crisis was so severe this time because it was accompanied by flash pulmonary edema, a sudden and severe accumulation of fluid in the lungs, causing severe respiratory distress. This is seen in patients with pulmonary veno-occlusive disease, or PVOD. PVOD is an extremely rare and often fatal form of pulmonary hypertension (PH) where the small veins in the lungs become blocked, causing increased pressure in the pulmonary arteries and eventually affecting heart function. There is no cure.

“[The doctor] told us that if she had PVOD, it is a ruthless and incredibly aggressive disease. The only treatment is lung transplant, and they would be referring Sadie to the lung transplant program at Stanford Medicine Children’s Health,” Carrie recalls.

Stanford Children’s is the only pediatric program in the Western United States that performs lung or combined heart-lung transplants from infancy through early adulthood, offering more than 35 years of experience—more than any other pediatric hospital in the region. Often, those on the waiting list are like Sadie, with significant pulmonary disease from PH and very young.

Through a lot of coordination, in January 2023 Sadie was airlifted to Stanford Children’s, where she was evaluated and then listed for a double-lung transplant.

“Literature shows us that survival after diagnosis of PVOD, which is after their first presentation, is usually no more than a year,” says Laura Green, RN, Pediatric Lung and Heart-Lung Transplant program manager. “It’s urgent to assess them for transplant candidacy, given that once approved to be placed on the transplant waiting list, the wait time for matching organs is unpredictable.”

Staying positive during a long wait

The smaller a patient is, the longer they often wait for a matching donor, due to smaller numbers of infant and pediatric organ donors. Finding the best way to bridge that gap until transplant was crucial.

“We started her on diuretic therapies to help remove some of the fluid from her lungs, and started her on steroids,” says Cissy (Xin) Si, MD, medical director of the Pediatric Lung and Heart-Lung Transplant program. “Not every patient responds, but Sadie was very responsive. That helped her get to a more stable spot.”

Sadie also presented a unique challenge because she was sensitized, meaning she had a high level of Human leukocyte antigen (HLA) antibodies that made it harder to find a compatible donor. The lung transplant program was able to successfully desensitize Sadie while she awaited transplant, improving her chances of finding a suitable match.

Despite the challenges, the Jackson family found ways to remain positive, leaning on their faith. Whether it was the transplant psychologist, their social worker, or music therapists, they knew Sadie was in the best hands possible as they prepared her for a rare treatment for her rare disease.

“Some people might say, ‘We can’t do lung transplant. The patient is too small,’” says Elisabeth Martin, MD, surgical director of Pediatric Lung and Heart-Lung Transplant. “But it’s a treatment. It’s an option we should use for sick patients. Here at Stanford Children’s, all of the teams from rehabilitation to the Cardiovascular Intensive Care Unit to pulmonology align in their roles in taking on a case like this. They have to be at the top of their game, so everything goes smoothly.”

Back to laughing and playing

In December 2023, 10 months after she was placed on the transplant waiting list for new lungs, Sadie got the call that there was a set of lungs for her. The family was ready. On the day of her surgery, her care team put up a sign on her door reading, “Happy Lung Day!” with personalized notes.

“They all genuinely care about Sadie. There’s an emotional investment. It feels like she’s not just a patient. They are her biggest advocate and truly want to see the best outcomes possible for her,” Carrie says.

The surgery went smoothly. Today, Sadie is back to playing the violin and piano, singing, and dancing.

“It means everything to me. She’ll just run around the house and say, ‘Look how fast I can go!’ She’s just back to herself. I’m so grateful she can give her sister a run for her money and that they can play together,” Carrie says.

Carrie is working on a letter to the donor family to express her gratitude and that the donor’s life continues to live on, helping Sadie thrive.

“Transplant is life-changing. We are so grateful to the donor, to the Lord Jesus, and to the team at Stanford Children’s who walked with us through this whole thing. I would encourage anyone to learn more about becoming an organ donor. You could make a world of difference in somebody’s life.”

Lucile Packard Children’s Hospital Stanford is nationally ranked No. 10 in pulmonology by U.S. News & World Report and has performed 57 bilateral double lung transplants and 42 combined heart-lung transplants since 1986. Learn more about our Lung and Heart-Lung Transplant services >