My daughter had a laryngeal cleft: our journey with dysphagia and thickened liquids

Laryngeal cleft (type 1) or deep intraarytenoid notch. I had never heard these words before my daughter’s diagnosis. Frankly, I was prepared for some kind of medical diagnosis after her year of illness. But I was completely caught off guard that her diagnosis was a swallowing disorder — a pediatric feeding disorder. I will share a brief summary of our journey here in this blog post, but I chat in a lot more detail in the podcast and video linked below!

We noticed a few symptoms in the first few days after she was born. Coughing and gagging at the breast were the most noticeable ones. But I also struggled with oversupply and overactive letdown, so we just assumed that her symptoms were due to my supply. Then, when she was 1 week old, I took her to a lactation support group where the lactation consultant suggested we get evaluated for a tongue tie (which can also result in gagging at the breast). My daughter was diagnosed with both a tongue and lip tie by a wonderful pediatrician, which we had revised shortly after. Her gagging nearly stopped and she was coughing at the breast so much less! I was SO happy to finally get started with a successful breastfeeding journey.

Fast forward a bit to five months old. She started daycare and immediately started getting sick. I initially assumed it was the typical start of school illnesses that many kids experience. But she was just sick SO MUCH. She was sick more than her peers and seemed to only be healthy for 1-3 days before getting sick again. And this went on for months. She had RSV, croup (more than once), and too many colds and upper respiratory infections to count. We were worked up for respiratory issues and immune deficiencies, but had no real answers. We saw a pediatric pulmonologist who diagnosed her with tracheomalacia (essentially a floppy airway) and asthma. We did inhalers and nebulizer breathing treatments. These helped her breathe a little better when she was sick, but didn’t help resolve the problem of the frequent illnesses. At the same time, she was also struggling with recurrent ear infections. We were referred to a wonderful ENT for ear tubes, but this doc also suggested a scope to look inside the top of her airway to see if they could identify any issues that might be contributing to her frequent illnesses. That’s when we got her diagnosis of a laryngeal cleft (type 1 – the least severe), which is sometimes also called a deep intraarytentiod notch. This meant that there was a notch at her voice box (larynx) that could potentially allow fluid or food into her airway (apsiration). This can cause inflammation, allow bacteria to grow, and cause infections in the airway.

After her diagnosis, her ENT recommended that my daughter get a swallow study done to conform if the cleft was causing food or fluid to enter her airway when she was eating or drinking (aspiration)… because some kids with a small laryngeal cleft do not experience any symptoms. I waited 3 months because I was SO convinced that she wasn’t possibly aspirating. Because I assumed I would notice. Of course, hindsight is 20/20. But I wish I wasn’t so confident. Because I didn’t know. Because she WAS, in fact, aspirating. And she was REALLY struggling to swallow. And she had likely been aspirating since birth.

At the swallow study, we discovered that she was unable to swallow liquids like water or milk without aspirating. The speech language pathologists tested different liquids to see if thicker liquids, like liquids as thick as honey, to see if these would also slip into her airway. While she did well with thick liquids (honey consistency), any liquids thinner than this, such as breastmilk or water, would slip into her airway. BUT she had no symptoms when she swallowed. No choking, coughing, gagging. She was silently aspirating. Which is why we didn’t notice.

We were prescribed thickened liquids and sent home. We had to mix a white powder into every liquid she drank to make it as thick as honey. I was worried that she would hate it. I was worried that she would get dehydrated. I was worried that she would need a feeding tube because she would refuse to drink. As a dietitian, I had worked with kids who on thickened liquids and who struggled to stay hydrated. So I fully understood the challenge that lay before us. I was an anxious mess. But my daughter did GREAT! She drank the thickened liquids like nothing changed and had zero issues, aside from maybe 1-2 days of slightly decreased intake when we first transitioned. I was SO proud of my girl.

Our SLP recommended that we stop breastfeeding during this process because breastmilk is a thin liquid. And I had no desire to start pumping again. While I was ready to make this transition because she was slowly losing interest in breastfeeding at 15 months, I do wish I was able to completely wean on my own terms. Note: Discontinuing breastfeeding for a child with dysphagia is not always necessary. It is important to chat with your SLP about your options if breastfeeding is important to you.

Transitioning to thickened liquids was a learning process. I had to mix her water for the day in the blender before daycare and send it to school in bottles for her to have throughout the day. Insurance and home health was a difficult because I wanted a specific brand of thickener (PuraThick) and we needed more than what the standard calculation said we did. I had to learn to plan ahead and bring extra thickened water everywhere because we couldn’t just fill up her cup at a restaurant or a friend’s house. I had to train her grandparents and her teachers how to thicken her water in case of an emergency, and we had to travel with our blender because shaker bottles would leave her water chunky. We also had to limit any meltable and juicy foods, like soups or watermelon, that had thin liquids in them that may pool in her mouth and cause an aspiration risk. It was a big adjustment, but we did it.

We pursued a less invasive surgical procedure to revise her cleft. Although the surgery went well, she failed her swallow study 6 weeks after. Then we pursued a more invasive surgery, which involved her ENT stitching the cleft shut. But she also failed that post-op swallow study.

We had limited options now, but we ultimately decided on a slow wean of her thickener. We rationalized this with the thought that she was failing her swallow studies because she had not been given the chance to learn how to swallow thin liquids and practice using the appropriate swallowing muscle coordination. So if we slowly decreased the thickness of her water, perhaps she would slowly train her swallow muscles to swallow thinner liquids (now that the cleft was revised). It took a few months of very methodical weaning with the supervision of her SLP and ENT, but it worked! We were able to ditch the thickeners 1 year after her dysphagia diagnosis. IT FELT SO GOOD. I will NEVER take for granted the fact that I can fill my daughter’s water bottle straight from the fridge without mixing the water in a blender first.

If you are reading this because you are navigating a new or potential laryngeal cleft or dysphagia diagnosis. I am sending you love and strength.

Don’t forget to check out the podcast or video linked above!