Like every noisy family with kids, Kelly and Joey Lafata operate above the soundtrack of their daughter’s constant singing and babbling. But for the Lafatas, this precious sound is one that they never thought they’d hear.
When Brooklyn was born in the Chicago area December 19, 2014, she had two open heart surgeries, quickly followed by a number of other procedures that led to her to getting a trach to help her breathe. She was put on a ventilator and got nourishment through a g-tube—all within the first three months of her little life.
Soon after, she was diagnosed with CHARGE syndrome, a disorder that features: coloboma, heart defects, atresia choanae (blocked nasal passage), growth retardation, genital abnormalities and ear abnormalities. Brooklyn had many, but not all of these complexities, which is common, because the CHARGE spectrum is so broad.
Because of her complex condition, Brooklyn was referred through our Aerodigestive & Esophageal Center and incorporated into the CHARGE Center. It was the best chance of getting her trach removed.
“Cincinnati had exactly what we were looking for,” says Kelly. “Initially, it was Dr. Cotton and his world-renowned reputation for tracheal reconstruction surgery, but after arriving for our first visit, we realized that the entire team is amazing. We fell in love with how they did everything as a team and made us feel confident under extremely scary circumstances for our Brooklyn and our family.”
The Lafatas wanted more than anything to get Brooklyn’s trach removed, but they knew they needed to do it at the right time and didn’t want to rush it. So they traveled back and forth from Chicago to Cincinnati every four to six months, over and over, until it was finally the day.
“We got great news that her trach would be removed a few months before her fifth birthday,” says Kelly.
Brooklyn underwent airway reconstruction for subglottic stenosis and now no longer has her trach. After the surgery, doctors weren’t sure if Brooklyn would be able to speak, because of the scar tissue that had formed on her vocal chords, which limited their movement. The Lafatas communicate with Brooklyn using American Sign Language, so they weren’t worried. More than anything, they were relieved to be free of the ventilator.
“But then one day, when she was about 3 years old,” Kelly says, “She just started making noises and it was the most beautiful sound I’d ever heard. It was a miracle.”
She hasn’t stopped talking since. Now, Brooklyn’s future has endless possibilities, and her parents believe that there isn’t anything she can’t overcome.
“She is thriving and doing all these things. And she’s not the same as every 5-year old, but you’d never know. All that we know is that she is just Brooklyn,” says Kelly. “Life is such a blessing. It’s been a long road, but we wouldn’t change it for the world.”