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By Boston Children's Hospital
| August 1, 2018
It’s a sunny summer day and Mae Koslow-Vogel is having a blast with her family as she blows bubbles, dances and belts out “Call Me Maybe” and some of her other favorite songs. Although it might seem like an ordinary afternoon for a vibrant toddler, such activities were out of reach not long ago. Even spending a few hours 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. What was originally believed to be a bout of pneumonia turned out to be far more serious: She was diagnosed with a rare genetic form of childhood interstitial lung disease. Known as an ABCA3 deficiency, the abnormality made it difficult for her to breathe without support.
At a time when most healthy 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 her body needed. Although Mae was originally 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. “She was gaining weight and seemed to be meeting milestones,” explains Maura. The couple opted to put the quest for 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. Desperate to find a way to have their family all together, Courtney and Maura began to make steps toward that goal, including moving to a new house with space for her respiratory equipment and round-the-clock caregivers. But 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, Interim Chief of the Division of Respiratory Diseases at Boston Children’s Hospital and Associate Medical Director of the hospital’s Lung Transplant Program. “We’ve got a donor match for Mae,” she told Courtney. “And it looks like a really good one.”
“I just sunk to the floor and started sobbing with relief,” Courtney remembers.
‘Everything feels special now’
The next 24 hours felt like the longest day of their lives, as Mae’s family waited anxiously—first for confirmation that the transplant was a go, then for word that the operation had been a success. Just three weeks after receiving her new lungs, Mae was finally able to come home for the first time, her trach removed, breathing completely on her own without any support.
Today, it’s difficult to believe that this energetic little girl spent the first 20 months of her life within the four walls of a hospital room. While she must take immunosuppressant drugs and other medications to protect her new lungs from rejection, and returns to Boston Children’s for frequent checkups, Mae’s care team is amazed by her progress. “She lived such an institutionalized life before and required so much support,” says Maura. “Her doctors are so surprised by her independence now.”
Indeed, “smart cookie” Mae is walking and talking—and singing and dancing—up a storm. A social creature, she’s building friendships with neighborhood kids and loves being silly with Rosie. The room her mothers once thought would be filled with hospital equipment? It’s become a playroom, brimming with brightly colored toys. 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.”
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