Laryngomalacia: A Mother’s Journey

Over the next six weeks, we continued to visit the pediatrician for weight checks and meet with lactation consultants. Vinny’s stridor (the official term for his squeaky noises) was becoming more severe, and we were noticing his ribs and neck being sucked in with each breath he took. At his eight-week checkup, our pediatrician decided Vinny couldn’t wait any longer to be seen by the ENT. He was only five ounces above his birth weight, was sleeping all the time, and his suspected Laryngomalacia symptoms were worsening. I was given strict instructions to head straight to the hospital for a direct admission, not even leaving the pediatrician’s office until we had a room number on the pediatric floor. I remember calling my husband, not being concerned. I figured we would be admitted, see the ENT, receive an official diagnosis, and be home the next day.

Upon admission, our nurse gave me a rundown of all the specialists our pediatrician had ordered for us to see. ENT, Gastroenterologist, Nutritionist, Occupational Therapist. The admission I expected to last one night, suddenly seemed like it would last a little longer. Within a couple of hours, Vinny was diagnosed as “failure to thrive” and an NG feeding tube was ordered. A hospital grade breast pump was wheeled into the room, and I was instructed to pump every two hours around the clock. My milk would now be fortified to increase the calories, in an effort to get Vinny to gain weight. I heard words like “malnourished” and “in distress” and suddenly felt a fear I never had felt before. Something was really wrong with my baby. It was more than noisy breathing, excessive sleeping, and slow weight gain. My husband comforted me as we watched multiple people poke and prod our not-even-8-pound two-month-old son.

Finally, around 8:30 that evening, the one specialist we had been waiting to see arrived. He introduced himself and let us know he would be performing a bedside scope on Vinny to check for Laryngomalacia. I held Vinny in my arms as the doctor inserted a long snake-like camera down through his nose, watching the findings on a screen. “Well, the diagnosis of Laryngomalacia is correct. Vinny will need a surgical procedure called a Supraglottoplasty.” Finally. We had the diagnosis. “So will you call us to schedule it?” my husband asked. The doctor responded with “No. I will book him an OR time for tomorrow. This can’t wait. Vinny can’t afford to wait.”

“Vinny can’t afford to wait.” Those words echoed in my head as the gravity of the situation set in. My baby needed surgery. What started as a normal Thursday, was now anything but. It was the day the line was drawn – before diagnosis, and after diagnosis. I remember barely sleeping that night. If I wasn’t pumping, I was researching NG tubes and Laryngomalacia and Supraglottoplasties. I was watching my tiny baby sleep in the big hospital crib, finding comfort in each squeak, knowing that meant he was breathing. I repeated the pattern for hours – pumping, researching, listening to his squeaks – waiting for them to call us down to the OR.

Finally, around 6 Friday evening, it was our turn. I sat in pre-op with my husband, rocking Vinny and staring at his perfect little face. I sobbed as I handed him over to the surgical nurse and anesthetist. My husband held me as we walked to the waiting room, where we were met by my parents, grandparents, and our older son. It felt like forever waiting for the ENT to come out and give us an update. Funny enough, the only other family in the waiting room that evening, was waiting for their infant to receive a tracheostomy. I remember thinking that even though I was scared, we were so lucky that our baby wasn’t that sick. Little did I know that in four short months, we would be in their shoes.

“We performed the Supraglottoplasty and placed his NG tube. Things went as expected. A nurse will come get you soon, to take you to the PICU for recovery. We will follow up tomorrow.” And just like that, we made it through Vinny’s first surgery and spent the night in the PICU. We were hopeful that he would begin to improve, grow, and thrive. The next morning, we were told that since he’d had a good night, we would be moved out of the PICU to a regular room. We would remain admitted “for a couple of days” to see if we could work on his weight gain. That couple of days turned into fifteen days, most of it spent back in the PICU following an episode of severe respiratory distress. We quickly realized Vinny wasn’t improving in the ways we had hoped.

The next two and a half months were filled with appointments, hospital stays, and tests. Vinny endured two more Supraglottoplasty surgeries, both of which didn’t yield the results his team hoped for. While we increased his team of specialists – which now included ENT, GI, Pulmonary, Neurology, Sleep Neurology, Plastics, Physical Therapy, Occupational Therapy, and Nutrition – Vinny continued to struggle. His list of diagnoses grew to include severe obstructive sleep apnea, Tracheomalacia, a Laryngeal Cleft type 1, hypotonia, severe GERD, and a mildly recessed jaw.

While recovering in the PICU after his third Supraglottoplasty, the idea of possibly needing a trach was brought up. Vinny was given one month to improve. Once again, we were told Vinny couldn’t afford to wait longer than that. The plan was, at the one-month mark, Vinny’s ENT would take him into the OR to check the status of his airway. Depending on what he found, along with Vinny’s progress during that month, the decision on a trach would be made in the OR. We went home determined that this third Supraglottoplasty would be the charm and Vinny would begin to breathe easy, grow, and thrive.

August 3, 2017 was the planned OR day. We arrived at the hospital knowing in our hearts that Vinny would leave with a tracheostomy. He hadn’t made much progress with his growth (at six-months old, he wasn’t even 12 pounds), and he was still struggling to breathe due to his Laryngomalacia and Tracheomalacia symptoms. He was missing milestones and still sleeping much of the time. Sure enough, we were right. When the ENT came to give us an update, he informed us a trach had been placed. Walking into recovery, I was flooded with so many emotions. I was happy the surgery was behind us, wondering how we even got to this place, relieved that he would hopefully begin to improve, and terrified of what would happen next. We weren’t prepared for “trach life” one bit.

That first day was a whirlwind. As they were getting him settled in the PICU, he woke up from the anesthesia, looking around. He looked terrified. The room was filled with nurses and hospital staff, hooking up monitors and poking and prodding him. He opened his mouth to cry… and there was no sound. The look on his face is a look I will never forget. Up until that point in his life, his only form of communication was his cry. Now it was gone. Tears were rolling down his cheeks, his face was bright red, his mouth was wide open, but there was no sound. I lost it. The amazing PICU nurses sat me down in a rocking chair and arranged Vinny, along with his wires and tubes, into my arms. As I rocked him, we both settled down. For the first time in a long time, we were both breathing easy.