“The MiniONE® Balloon Button was put in place and has served as her life saver ever since.”
A proven fighter since conception, Maria graced this world three and a half years ago during an emergency C-section weighing 5 lbs. 11 oz. Due to complications during the procedure, Maria was taken to the NICU for further observation. During her eight day stay the doctors noticed she had something called choanal atresia, a congenital disorder where the back of the nasal passage is either narrow or blocked by abnormal bony or soft tissue.
As first-time parents, we were so excited to finally bring her home. However, we quickly noticed that something else wasn’t right. She was the perfect infant as she rarely ever cried, yet we had to watch her every second of the day because she had difficulty breathing and often turned blue. Feedings were long and hard as she constantly sounded as if she was drowning in a pool of water taking breaks often to gasp for air. Maria was diagnosed with severe reflux at two weeks old and put on medication. Yet there still seemed to be something wrong.
After various doctor and emergency room visits, Maria was life flighted on Christmas Eve at just one month old to Akron Children’s Hospital. During her lengthy stay, she was evaluated by another ENT who listened to our description of the events leading up to her flight. He immediately did a laryngoscopy to check the position of the tissue around her voice box and diagnosed her with severe laryngomalacia. Laryngomalacia is a piece of floppy tissue above the vocal cord that falls into the airway when breathing in. It’s the most common birth defect of the voice box. Maria underwent surgery where she had a supraglottoplasty to stop the life threatening apnea and blue spells. The days and weeks following the procedure didn’t show much improvement.
She was having an extremely hard time sucking, swallowing and breathing at the same time. Determined to figure out what was wrong with our beautiful 5 lb. baby, her team recommended a Video Fluoroscopic Swallowing Exam to evaluate her ability to swallow safely and effectively. The test proved she indeed was aspirating on all thin liquids and an NG tube was placed in her nose.
Maria was burning more calories trying to suck, swallow and breathe than she was consuming and failing to thrive. At three months old her medical team decided that due to the structural abnormalities in her airway, her severe reflux, oral aversions and aspiration issues she was in need of a feeding tube. We were filled with fear as we had never seen a feeding tube and really didn’t know what to expect.
The MiniONE® Balloon Button was put in place and has served as her life saver ever since. Maria is on a high caloric, gluten and nut free, honey thickened diet. Her MiniONE® allows her to play and participate in various activities like ballet and gymnastics.
We purchased the training doll that also has a feeding tube just like her. Not only does she play with it but we have been able to use it as a teaching tool to help educate our family, friends, teachers, and classmates. By bringing awareness to others around us, they gain more knowledge on feeding disorders and the different ways there are to eat. If you ask her what makes her special she will show you her tube and if you’re lucky she will show you her favorite part about it…it glows in the dark!