See Who Inspires Us | Meet Mae

It’s a summer day and Mae Koslow-Vogel is having a blast as she blows bubbles, dances and belts out some of her favorite songs. Although it might seem like an ordinary afternoon, such activities were out of reach not long ago. Even spending time outside with her mothers, Courtney and Maura, and big sister, Rosie, was something the 2-year-old could only dream about.

Mae was just an hour old when clinicians noticed that her breathing was labored and whisked her away to the neonatal intensive care unit. Soon, she was diagnosed with a rare genetic form of childhood interstitial lung disease known as an ABCA3 deficiency.

 

At a time when most infants are able to head home with their parents, Mae remained in the hospital, dependent on a ventilator and pressure support to get the oxygen she needed. Although Mae was listed for a double-lung transplant shortly after her birth, her parents and clinicians hoped that she, like some children with ABCA3 deficiency, would outgrow her symptoms. The couple opted to put transplant on hold while Mae received pulmonary rehabilitation at a local hospital.

Making the decision

Yet as months passed, Mae’s breathing didn’t improve. When the active toddler started accidentally detaching from the tracheostomy tube that connected her to the ventilator, her mothers knew they had to make a decision. “As much as we wanted to be able to bring her home, we just knew it wasn’t safe,” says Maura. “We couldn’t keep living like this, and neither could Mae.”

Incredibly, just 30 days after Mae was re-listed for transplant, she received a new pair of lungs. “I’d had a premonition that afternoon — that maybe today would be the day Mae would get her new lungs,” says Courtney. Still, it came as a shock when the phone rang that night. It was Dr. Debra Boyer, associate medical director of the Lung Transplant Program at Boston Children’s Hospital. “We’ve got a donor match,” she told Courtney. “And it looks like a really good one.”

“I just sank to the floor and started sobbing with relief,” Courtney remembers. Three weeks after receiving her new lungs, Mae finally came home, breathing completely on her own.

Mae-Lung-Transplant
Mae-Lung-Transplant 

‘Everything feels special’

Today, it’s difficult to believe that this energetic little girl spent the first 20 months of her life within a hospital room. While she must take immunosuppressant drugs and other medications, Mae’s care team is amazed by her progress.

Indeed, Mae is building friendships and loves being silly with her sister. And each new milestone is just as meaningful as the last.

“We don’t take anything for granted,” says Maura. Courtney nods, eyes moist with tears. “Everything feels special now.”