You’re Not Overreacting: Our Baby’s Hidden Airway Problem

Greyson was my firstborn. When he arrived, his breathing sounded a little off to me but I kept being reassured that newborns sound noisy and weird and that I shouldn’t worry. These worries started to grow once we brought him home and my breast milk came in. Almost every feeding, he would choke and sometimes his lips would turn blue. I made the first appointment I could with a lactation consultant who helped me control my letdown and let me know that choking and his lips turning blue happens sometimes and not to worry.

an example of him eating and at the end, you can hear his owlet monitor go off due to his oxygen desatting to 74

an example of his breathing at night while trying to sleep

another exmaple of his breathing at night while trying to sleep

After weeks of this, his breathing grew increasingly worse. When I put him down to sleep at night, the noisy breathing turned wheezy with major pauses between breaths. I was sick with worry every night wondering if maybe I just had postpartum anxiety. Is this just the common problem every new mom has about their baby’s breathing?

When researching possible causes, I found that some babies have something called “silent reflux.” This is when babies don’t spit up a lot but their reflux sits in their throat, irritating the airway and causing raspy breathing. I also found something called laryngomalacia. This is when the cartilage of the larynx is softer than normal, making it floppy. This floppy tissue can cause noisy breathing and pauses if it collapses over the airway. With this information, I decided to completely cut out dairy to see if it would help the possible silent reflux and ease any irritation in his airway.

Despite this, he was still having frequent pauses in breathing. When he was about four weeks old, I finally emailed his pediatrician at two in the morning (after not being able to sleep with so much worry) and told her all of the symptoms as well as what I thought it might be. They were able to get me in the next morning. After examining him and hearing all of his symptoms again, she told me he seemed fine and maybe needed a swallow study. This seemed a little irrelevant to me considering his symptoms and I felt I wasn’t being taken seriously. Again, I felt like a crazy person.

 I got a call a week later to schedule the swallow study and the next availability was three weeks out. I asked myself how we were supposed to deal with this for another three weeks. I was grateful I had the Owlet sock that recorded his oxygen while he slept. I think that was the only thing keeping me sane.

We ended up never going to that swallow study because I was at my wits’ end and took him to the ER. Things kept getting worse. He had labored breathing as well as retractions in his neck and chest. I told all of the doctors what was going on, let them listen to recordings of his breathing I had taken at night and showed them videos of his long pauses while sleeping. They did a chest X-ray, asthma treatment and used a suction tube to get out any potential mucus in his nose. They didnt find anything and nothing else helped. Again, I was met with a shrug and a referral to an ENT. I felt so discouraged and insane.

Luckily, the ENT was able to get us in a few days later. I was hopeful but nervous. Would they also say it was nothing? Was I really just a crazy first time mom?

After a quick scope of his throat, the ENT doctor knew exactly what it was. A vallecular cyst. I had never heard of this before. I was met with shock, worry and relief all at the same time. His next sentence was that we would need surgery to fix it and that if I had waited any longer, our sweet baby boy could have slowly suffocated and potentially died.

What is a vallecular cyst?

A vallecular cyst is a fluid-filled sac at the base of the tongue (the vallecula). It’s present from birth and can partially or completely block the airway, especially when babies lie down. It often causes noisy breathing (stridor), choking, feeding difficulties and sometimes life-threatening airway obstruction (Crysdale & Bedard, 1984).

Vallecular cysts are rare. Among infants with congenital laryngeal lesions, they account for about 10% of cases—far less common than laryngomalacia (Holinger & Barnes, 1969). Because the symptoms often look like reflux or laryngomalacia (noisy breathing, choking, blue spells) they’re frequently misdiagnosed or diagnosed late. Multiple case reports describe parents being told it was reflux or normal newborn breathing until severe airway distress developed (Prakashkumar & Mukhopadhyay, 2018; Prowse & Knight, 2003). Untreated, these cysts can lead to progressive airway blockage and, in severe cases, suffocation (Rupa et al., 1991).

I’m writing this because more awareness needs to be brought to this rare but life-threatening condition. Too often, parents who express worry about a baby’s breathing are told it’s normal, that they’re overreacting, that it’s just reflux or laryngomalacia or that it’s their own anxiety talking.

If you’re a parent reading this and your baby is struggling to breathe, has noisy or wheezy breathing that gets worse when lying down, frequent choking with feeds, or pauses in breathing—push for answers.

Don’t feel crazy for advocating for your child.

Greyson’s story is proof that sometimes a parent’s instincts are what stand between life and death.

References:

Crysdale, W. S., & Bedard, Y. C. (1984). Congenital cysts of the larynx: Classification and treatment. The Laryngoscope, 94(5), 546–549. https://doi.org/10.1288/00005537-198405000-00008

Holinger, L. D., & Barnes, D. R. (1969). Laryngeal cysts in infants. Annals of Otology, Rhinology & Laryngology, 78(5), 1015–1025. https://doi.org/10.1177/000348946907800519

Prakashkumar, B., & Mukhopadhyay, S. (2018). Vallecular cyst in infants—a diagnostic challenge. International Journal of Pediatric Otorhinolaryngology, 106, 81–84. https://doi.org/10.1016/j.ijporl.2018.01.024

Prowse, S., & Knight, L. (2003). Vallecular cyst: A cause of upper airway obstruction in a neonate. Anaesthesia and Intensive Care, 31(3), 319–322. https://doi.org/10.1177/0310057X0303100311

Rupa, V., Mann, S. B. S., Jacob, M., & Mathew, J. (1991). Vallecular cyst: A cause of upper airway obstruction in infants. Journal of Laryngology & Otology, 105(10), 853–855. https://doi.org/10.1017/S002221510011780X