Family Loses Infant Daughter to Rare Lung Disease

Eight-month-old Aoife McGowan spent the last month of her life in the hospital battling pulmonary veno-occlusive disease (PVOD), a rare form of pulmonary hypertension involving blockage of the small veins in the lungs. In her memory, Aoife’s family, including her grandmother, Peggy Johnson, are raising awareness and funds for lung disease research by participating in the American Lung Association in Ohio’s LUNG FORCE Run/Walk in June.

After a chest x-ray revealed a questionable dark spot, Aoife was sent from the pediatrician to the emergency room. She was admitted with a respiratory syncytial virus, common in children under the age of two. Though she overcame that, her oxygen levels wouldn’t stay up on her own.

“As long as she was on oxygen, she was fine, she would play and laugh,” Johnson said. “As soon as they would take her off the oxygen she would crash. It was one step forward, and two steps back.”

Doctors prescribed a steroid stabilizing Aoife’s oxygen levels allowing her to return home. Two days later, she was back in the emergency room having trouble breathing. Aoife spent another two weeks undergoing further tests searching for the problem. Needing higher levels of oxygen, she spent her last night in intensive care.

“In less than six hours since I’d seen her, the change was unbelievable. Her color was wrong, she had more tubes in, her oxygen level was up to the max and she was barely moving,” Johnson said. “All we could do was take turns holding her, I took my turn and she started gasping for air.”

Aoife’s nurses called a code and they worked on her for an hour and a half before Aoife’s heart gave out. An autopsy finally revealed she had PVOD, a lung disease so rare it only occurs in one-two patients per 10 million people.

“I would like to find some cure for this disease, like everyone else with any illness. I understand funds won’t necessarily go to something this rare, I know that,” Johnson said. “I just want to do as much as I can to help the next person along, whatever that is, fundraising for cures or research that’s what I want to do. I don’t want anyone else to go through this.”

While in the hospital, Aoife found ways to share her personality and put a smile on other’s faces. Johnson watched her grow, play, and learn.

“She actually pulled herself up to a standing position the night before she passed,” Johnson added. “She was ready to start moving, ready to crawl and go for the world. I miss her terribly.”

Johnson and her family will honor Aoife by participating in the Lung Association’s virtual event in June, shortly following Aoife’s birthday on May 14.

The Lung Association’s virtual LUNG FORCE Run/Walk will be held throughout the month of June. Participants are encouraged to run or walk their targeted distance outside while respectfully distancing from others or inside their own homes. Registration is $25. More information can be found at LUNGFORCE.org/Cincinnati.