When Hazelynn was about 2 month old, we noticed a congested sound in her throat during feedings. Her pediatrician said not to worry about it. As she got older, we noticed she always had a slight cough, especially when eating/drinking & so I brought her to my pediatrician who suggested a pediatric pulmonologist and a barium swallow test. The swallow test showed aspiration and so we started speech therapy for feeding and the pulmonologist diagnosed her with asthma. (She wasn’t even 2 yet). It was odd because the same doctor told us her lungs sounded clear. The doctor prescribed inhalers & steroids. Her slight cough did not get better and she was also coughing more when eating/drinking. Fast forward thru countless tests, constant respiratory illnesses and meds, we finally had another swallow test and a triple scope done w/ an ENT, Pulmonologist, & gastroenterologist at about 18 mo. The swallow test showed she needed to be on “nectar thick” liquids and the triple scope showed her airway cartilage was soft/floppy and underdeveloped. And so Hazy was put on more steroids, constant antibiotics and albuterol in a nebulizer. (We later found out that Albuterol makes airways relax and makes it harder to breath in most people with TBM.)
She was always sick and seemed to have a hard time breathing, especially at night. Her 2nd year was very scary for my husband and me. I was constantly doing research trying to figure out what the heck was going on with Hazy when I came across the Facebook group called CureTBM. That day changed my life. Hazy’s life. TBM stands for tracheobronchomalacia and is a rare condition that occurs when the walls of the airway (specifically the trachea and bronchi) are weak and partially collapse when exhaling.
I connected with parents of little ones that went thru the same thing, and learned that Boston Children's Hospital had doctors who specialize in Pediatric TBM. We scheduled an appointment and met with doctors who listened, understood, and for the first time I didn’t feel like a crazy mom. I was told to stop giving her albuterol as it was hurting her and making her worse, (I should have trusted my gut) and gave us a plan to start with Hazy.
That was March 4th of 2020. The pandemic hit, and honestly, Hazy was doing better than ever. But she’s on a 3% hypertonic saline 2x a day with thickened liquids and when sick we go to 7% hypertonic saline, & atrovent in the neb as well. She’s finally scheduled for a triple scope in Fall 2020 at Boston Children’s Hospital and we will hopefully get even more answers and a plan in place.