Double Lung Transplant Patient Blows Candles Out for the First Time on Birthday Cake
When you walk through the main lobby at Location B, one of the large pictures hanging against the wall is a smiling 7-year-old girl with her arm wrapped around her dad. In the photo, she’s wearing a nasal cannula (a device used to deliver oxygen) to help her breathe.
Her name is Nourah Alshammari, and she’s now 16. In October, Nourah celebrated her sweet 16 by blowing out the candles on her birthday cake, something she had never been able to do before because of her lung disease. A double lung transplant made it happen for her.
“When I blew my candles for the first time for my birthday, I took a deep breath,” said the teen. “Before, I couldn’t do that, and I watched my younger siblings do it for me.”
Nourah came to Cincinnati Children’s from Kuwait with her family when she was 3 for treatment for hereditary pulmonary alveolar proteinosis (PAP). It’s a rare, genetic disease that causes the lung’s tiny air sacs (alveoli) to fill up with an oily substance called surfactant, making it difficult to breathe.
“We had talked to hospitals worldwide, and many refused to accept us and treat Nourah’s condition until we reached out to Dr. Robert Wood,” said her mom, Fateema Alshammari, through a translator. “I am forever grateful to Dr. Wood.”
Robert E. Wood, MD, PhD, now retired, was Nourah’s primary pulmonologist when she first arrived at Cincinnati Children’s. The two formed a strong bond early on.
“I’ve always said this child, Nourah, is very special to me,” said Wood.
Wood had implemented a treatment procedure years earlier at Cincinnati Children’s called whole lung lavages with the support of the hospital’s perioperative and anesthesia teams. The invasive procedure is done with the patient under general anesthesia and requires several hours. One lung is physically washed out with saline while the other is mechanically ventilated. Several days later, the opposite lung is washed.
“The lung lavages provided a dramatic improvement for Nourah,” said Wood. “She would have died without them. We instantly saw a decrease in her symptoms and her oxygen needs, but within 2-3 months, she would require another set of lung lavages.”
When Wood retired in 2020, Christopher Towe, MD, director of the Rare Lung Diseases Program, took over as Nourah’s primary pulmonologist. He continued performing lung lavages as a treatment for Nourah.
But over the years, her condition slowly deteriorated.
“She became less mobile, and by the 7th grade, she needed to use a wheelchair,” said Fateema. “She lost a lot of weight, and her body became weak. She was tired all the time because her body needed more oxygen.”
Nourah, age 16, and her dad stand in front of a photo of the two of them when she was 7 years old. The photo is displayed in the main lobby of Location B. Nourah recently underwent a double lung transplant that has freed her from having to use any assistive breathing devices.
A lung biopsy revealed a second abnormality in addition to the alveolar proteinosis that was causing Nourah’s lungs to scar. Medical treatments did not appear to help. In October 2020, doctors admitted Nourah, then age 15, to the hospital to give her more oxygen support as her lungs were failing more.
“Nourah spent many months receiving respiratory support, starting on A7 Central, before we transferred her to the Pediatric Intensive Care Unit,” said Towe. “Eventually, we got to the point where we didn’t do any more lung lavages as it got too risky because of the condition of her lungs.”
In February 2021, Nourah was listed for lung transplant due to her condition progressing, despite the medical treatment she was receiving. In April, she was moved to the Cardiac Intensive Care Unit where doctors placed her on extracorporeal membrane oxygenation (ECMO), which acts as an artificial lung.
“We did everything we could from the beginning to keep Nourah from getting weaker,” said Towe. “I was pushing her. We had her up and walking while on ECMO. If you're awake and ambulating, you're not getting as weak as fast.”
Like most teens, Nourah turned to social media to help make the most of her situation.
“Because of Nourah, I joined TikTok,” said Don Hayes, Jr., MD, medical director of the Lung Transplant Program. “Her ICU care team was so amazing, including the physical therapist, occupational therapist, and the nurses who would get her up out of the hospital bed and go on walks with her in the hospital. They would literally dance with Nourah while she was on ECMO to not only rehabilitate her but also allow her to behave as a normal teenager would despite the sophisticated level of care that was sustaining her life. As a result of this, Nourah posted various things on TikTok of the physicians involved with her care. She was simply being a normal teenager, even though she was on ECMO.”
On May 12, 2021, Nourah received a double lung transplant.
“Never once did I feel that her medical care team gave up or stopped searching for how to save Nourah’s life,” said her mom.
Towe remembers the first time he saw her post-transplant.
“She was talking to me, and she said, ‘I want to show you something.’ And she took a big breath. It was something she had never done before, and it was amazing.”
Also amazing was Nourah’s recovery. She was discharged from the hospital 16 days after her transplant.
“She came out of the surgery just ready to go,” said Hayes. “It speaks to her courage and dedication.”
Before she left the hospital, Wood stopped by to see her before moving to North Carolina.
“To me, Nourah is like my granddaughter,” Wood said. “There was no way I was going to leave town without saying goodbye, if I had the opportunity.”
Her care team lined the hallways, applauding and cheering for Nourah on the day she left the hospital.
“It was a wonderful surprise!” her mom said. “Just about everyone that was involved in Nourah's care came that day. It was the most beautiful thing I’ve ever seen.”
“It meant a lot to me,” Nourah said. “I felt that a lot of people loved me.”
Nourah and her dad stopped at Location B in front of her picture frame so her mom could take a new picture of her smiling without needing oxygen support.
“I’ve always had the picture of Nourah walking out of Cincinnati Children’s healthy,” Fateema said. “I could always see it. Despite how sick she got, I always believed she was going to leave the hospital healthy and walking.”
Nourah is now enjoying life without having to use any oxygen equipment or having to go through any more breathing treatments. She enjoys taking walks, riding her bike, and playing sports.
“The transplant has completely changed my life,” Nourah said. “There are so many things I can do that I couldn’t before. Life is good.”