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.
“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 the Center for Airway Disorders (CAD), and Dr. Rosen from Boston Children’s Aero-Digestive Center.
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 the surgery went very well. 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.