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Thursday, April 4, 2013
Olivia Cabral, 3, turns the pages of her favorite book as her mom reads, “Olivia couldn’t find her voice. So she looked high, high, high. Then she looked low, low, low. But she still couldn’t find her voice. So mommy and daddy brought her to see the best voice detective ever! Olivia took a deep breath in, and when she went to breathe out, out came her voice!”
There’s a reason Olivia loves this particular story so much – it’s her own. Her mother, Adrianne Pittorino, wrote and illustrated the book “Olivia’s Voice” to help Olivia understand the long journey she would face at MassGeneral Hospital for Children (MGHfC). Mute all of her life, Olivia’s transformative airway surgeries have allowed her to talk for the very first time.
Olivia was born premature at 24 weeks at Dartmouth-Hitchcock Medical Center in Lebanon, NH, where she spent a total of six months in the Neonatal Intensive Care Unit (NICU). Unfortunately, this stay was her first hospitalization of many. Because Olivia had trouble breathing during her first six months, her doctors repeatedly inserted and removed a breathing tube while her lungs developed, an invasive procedure that often has serious consequences. She was soon transferred to MGHfC, where she was treated for severe damage to her airway as a result of over 16 intubations and extubations.
After two months at MGHfC’s NICU, Olivia had a tube, or trache, placed in her airway so she could breathe independently without the use of her nose or mouth. It was a temporary fix, though. The amount of damage done to Olivia’s airway meant she could not talk. Olivia needed total airway reconstruction, a procedure that could only happen when she was least three years old. Until then, Adrianne took Olivia home for the first time.
“You’re scared enough taking a baby home, but with a trache and not being able to hear her? When you’re initially hit with something like this, you just think your world is over,” Adrianne says. “You think your whole life has turned upside down, and you couldn’t possibly have imagined anything worse at this point. What I used to think was devastating five years ago, I think is possible now.”
Once home, Adrianne focused all her efforts on finding a voice and airway expert who could give Olivia the chance she deserved. After meeting Christopher J. Hartnick, MD, co-director of the Airway, Voice and Swallowing Center (a joint effort of MGHfC and the Massachusetts Eye and Ear) she knew she had found Olivia’s “voice detective.” Dr. Hartnick, along with the MGHfC PICU team, has traveled to Equador for the past four years to perform airway surgery on children like Olivia. And after her gratifying experience with the MGHfC NICU staff, Adrianne says she wanted to be at MGHfC for the entirety of Olivia’s care.
“I’m a nurse myself, and it was a whole different world for me being on the other side as a parent,” Adrianne says. “At one point, the NICU staff gave me an assignment to walk down Charles Street, knowing that I needed to be away for a minute. They dressed Olivia up with little bows and texted pictures of her to me. My heart was in my throat.”
After securing her daughter’s airway surgeon, Adrianne set to work preparing Olivia for her future surgery. She taught herself and Olivia sign language, meticulously maintained all of her medical equipment and monitored her nutrition and strength. In addition to keeping Olivia’s health in check, Adrianne searched for ways to emotionally prepare Olivia. When Adrianne visited her local library for children’s books to teach Olivia about anesthesia and surgery, she found the books either outdated or confusing.
Unwilling to give up, Adrianne took matters into her own hands and wrote Olivia her own book, “Olivia’s Voice.” Filled with drawings of Olivia searching for her voice through mountains and oceans, the book tells the story of Olivia’s adventure meeting and working with Dr. Hartnick. Little frogs hop across the pages, and the story incorporates vocal therapy cues like bumblebees so Olivia can “buzz” along as Adrianne reads.
“One of the greatest concerns parents have during these procedures is the anxiety a child feels being put to sleep so many times and the frightening process of it,” Dr. Hartnick says. “Even before the book, Adrianne was so creative in the ways she would soothe Olivia. The book is yet another testament of her mother’s love for her.”
Ready as she’d ever be, three-year-old Olivia and Adrianne came to MGHfC this summer for Olivia’s first big procedure. During the surgery, Dr. Hartnick removed part of her rib to reconstruct and open up her airway. After finishing the surgery, Dr. Hartnick told Adrianne to not expect to hear Olivia speak just yet, so Adrianne waited with anticipation. Finally, one fall day on the piers in Marshville, Mass., Adrianne got her wish.
“We were all together on the pier feeding the seagulls, and she came running towards me, saying ‘Mama! Mama! Mama!’” Adrianne says. “I just stopped. I can’t explain how long I’d been waiting to hear that and know that it’s all going to be okay.”
The next procedures, spanning the course of the next several months or years depending on Olivia’s overall health, will include tracheal surgery, with the ultimate goal of removing her trache. Dr. Hartnick says he thinks Olivia’s future will be bright, with the hopes of Olivia eating, breathing and speaking on her own. Until then, Olivia is getting used to using her vocal chords and developing her voice. Her small voice is still faint, but her big brown eyes and bouncy blonde pig-tails beam with enthusiasm any time she makes a sound.
“My hopes and dreams are for her to be a strong, confident woman,” Adrianne says. “I think she’s going to be teaching a lot of us that no matter what, whatever you’re given in life, you can work with it.
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