Stories about: Center for Airway Disorders

Step by step: Sloane’s incredible journey with laryngeal cleft

laryngeal cleft treatment

Like most first graders, Sloane has a jam-packed schedule, filled with fun activities such as dancing, ice skating and playing tennis. But every now and then, this busy girl needs to take a break, even if that simply means taking her time to sip a glass of water. “I remind her that, sometimes, she needs to slow down,” says her mom, Tarra.

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Trusting their instincts: Family finds help for laryngeal cleft

laryngeal cleft treatment

For some kids, the hospital can be a scary place, where even doctors with the best intentions poke, prod and serve up yucky-tasting medication. But for three-year-old Jack Steinberg, a visit to Boston Children’s Hospital is worth the trip from his home in Great Neck, New York. “No, it’s really fun,” Jack’s mother, Jessica, recently overheard him telling his older brother, Henry, who isn’t a fan of doctor visits. “They give you toys and stickers there!”

Jack’s cheerful attitude seems at odds with his recent health challenges. In fact, says his father, Noah, “If you saw him walking down the street, you’d never know anything was wrong with him.”

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Hear me roar: A mother hunts down answers for her son

If it’s true that raising boys is not for the fainthearted, then Nicole Laws is truly lionhearted. A nurturer and a protector, beautiful and strong, this mother of four boys will hunt down the best solution to a problem … no matter what stands in her way.

Mason was born on Jan. 28, 2011, in Syracuse, New York. A month premature, he struggled with eating and breathing, but Nicole wasn’t overly worried. “This was our fourth child. The first three had reflux, so I was thinking, ‘This will be a piece of cake!’” Mason was observed for a few days at the local hospital and sent home.

Unfortunately, Mason’s issues persisted. Nicole and her husband Cliff had to hold their son in just the right position and give him frequent breaks to feed him. Sleeping was a struggle, to say the least. “Mason couldn’t tolerate laying flat,” remembers Nicole. “He would sleep on top of me sitting in a chair — all night long.”

We wouldn’t be where we are now if I didn’t push hard for answers and say ‘no’ when I felt something wasn’t right. ~ Nicole, Mason’s mom

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Breathing easy: Samantha’s story

By Stacey Kutzelman, whose daughter Samantha Hinton spent more than a decade suffering with a laryngeal cleft. After treatment at Boston Children’s Hospital, Samantha is now enjoying just being a kid.

Samantha at Boston Children's

“You mean you can breathe all the way down there?” my daughter Samantha asked me after 11 years of breathing troubles. I can’t explain the panic and heartbreak I felt to hear these words. I also wondered what they could mean for her.

Samantha was born full-term, but throughout her first years, she screamed all night long, her breathing sounded like she was under water and she constantly battled with seasonal allergies. Later, she struggled with pneumonia and spent time in the hospital for what I called the 100-Day Cold. At 4-years-old, she fell on the playground, which collapsed a portion of her lung. She used her inhaler and nebulizer regularly, and we just got used to it.

Until she was 9-years-old, I brought her various doctors hoping to find the root cause, but to no avail. Then, she lost a significant amount of weight and became ghostly pale. Each time she ate, she had trouble breathing, so she chose not to eat much. That is when I met with Samantha’s saviors, Dr. Rahbar, DMD, MD,  from Boston Children’s Center for Airway Disorders, and Dr. Rosen from the AeroDigestive Center.

These days Samantha is running without breathing issues

They were both very understanding when I explained Samantha’s symptoms, which I thought made no sense. But when Dr. Rosen walked out of the endoscopy exam, they had an answer for me: Samantha had a laryngeal cleft, a very rare birth defect, and the physicians at Boston Children’s had a solution.

The decision to operate was an easy one, and on July 11, 2012 my daughter underwent surgery to repair her laryngeal cleft. I can’t say enough about the doctors and nurses in the ICU—the entire staff was wonderful, and her stay was fantastic.

It has been seven months since her surgery and her nebulizer machine has remained in the closet. Her inhalers are sitting untouched at the bottom of my pocketbook. This fall, Samantha ran cross country, as well as a charity 5K to benefit Boston Children’s. Without this place, she would not have been able to do it—free of her inhaler.


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