Mila's Laryngeal Cleft Story

New York, USA  |  December 2025

By Michelle Medic

Mila is my first and only child. I got pregnant with her at 34 and delivered at 35. I had a pretty normal pregnancy with a few little complications along the way: severe acid reflux, chronic UTI's, kidney stones, and was hospitalized with what they suspected was preeclampsia (thankfully it was not). She was born on Oct. 8, 2021, at 9:51 pm. 

She came 10 days early. My water broke at 6 am, I got to the hospital at 7 am, and was on pitocin all day. I never went past 2 cm dilated. Finally around 8:30 pm they decided to do a C-section for both of our safety. Since she was born late at night, we didn't get to do our first feeding with her until the next morning. 

I tried to breastfeed, but it just wasn’t working. They noticed she had a pretty severe tongue tie, which was probably why it was incredibly painful, and she just couldn't latch on. So we decided to just formula feed. I wrestled with the guilt of that for a bit, but quickly realized that a fed baby is best, regardless if it’s formula or breast milk. I wasn’t about to allow myself to go on a guilt trip over not being able to breastfeed – us moms deal with enough emotional turmoil, we don’t need more! 

From that very first feeding, something just felt off. My daughter was barely 12 hours old, and after just a few sips, wasn't interested in feeding. I thought, "She's got to be starving, right?!" We brought her home two days later, and I downloaded an app to track feedings and wet/dirty diapers. She was just not eating how a "regular" newborn should. She would have 10 ounces in a DAY. On a good day, 15, 17, maybe 20. It went on like that for weeks.

Of course we mentioned this to our pediatrician, who suggested changing formulas, then come back in another month. We came back when she was a month old and she barely gained a pound. We tried everything: different formulas, different nipples, different feeding schedules, various feeding positions, praying to God, doing a rain dance, ANYTHING to get this kid to eat. NOTHING. 

At 3 months old, she was diagnosed as "failure to thrive” and was completely off the growth charts. She looked tiny, gaunt, with almost lightly bruised eyes. It shattered me to see her – I was the one who felt like a failure. The pediatrician was nice, but she was like, "Well, you're a new mom so obviously you're worried, and you don't know what to do.'' After that we quickly switched. I may have been a new mom, but I know my child. 

At this point, Mila very quickly developed a severe oral aversion. If she saw a bottle or even a bib, she would scream bloody murder. I can still remember the dread of knowing it was feeding time. My husband and I would both make excuses to each other to make the other one do it. Obviously as a joke – clearly Mila was our first priority. It was just extremely overwhelming.

At the same time, when she was 3 months old, our new pediatrician suggested seeing a pediatric gastroenterologist. This doctor ran multiple tests – blood, urine, fecal. We had her see a neurologist to get an MRI, plus a full cardiac workup, and pulmonology. We tried special formulas – Nutramigen and Alimentum – but nothing worked. She never lost weight but wasn't gaining. She was in newborn diapers until about 7 months old.

After a month of seeing our GI and nothing working and all tests coming back normal, we were faced with the inevitable. GI said, "In order to keep this baby safe and alive, we have to at least put in an NG tube and she will have to be hospitalized." Our hearts broke. We felt like failures. We panicked. Do we actually do this? We had never had this happen to any of our friends or family. What was the right choice? But we knew in our hearts it was the right and only thing to do to keep her healthy. We didn't know it at the time, but our children's hospital was about to become our home for the next year and a half. 

We left the GI's office, went home, packed our bags, and went right to the hospital. She wasn't admitted until the middle of the night. In the morning, they decided to run some tests on her. They also wanted to do a MBS (modified barium swallow study) to check her swallow. The swallow study showed she was silently aspirating, which would explain a little bit of why feeding had been incredibly difficult and a chore up until this point. What it didn't show us was WHY. (SIDE NOTE: in hindsight, a triple scope would have saved us a YEAR of invasive testing and useless feeding therapy because a year later, it easily diagnosed her problem.)

After seeing which consistencies she was aspirating on (thin and some mildly thick), they decided to not put in the NG tube yet and to try thickening her formula and see if that would get her to eat. BAM! The next 24 hours at the hospital she bottle fed like a champ, eating more in those 24 hours then she did in four months! We were like, “Ok! Good! We have our answer!” So they discharged us and we went home. It was a Friday morning. That ENTIRE weekend, over 48 hours, she only ate 9 ounces. 

By Sunday evening I was hysterical. Monday morning we were admitted right back. In the NG tube went, and we officially became a tubie family. Within a day, I could program that pump in my sleep. Calculate feed rates like a math whiz. But the first few months of finding out which rate your child can handle is a tedious game. With the amount of laundry I had to do from puke and how many times I steam cleaned my couch from all the vomit, if I had a dollar for every time that happened, I could easily retire now. NG tube life sucked.

My daughter was now 5 months old, discovering her hands, and that she liked to grab things. She would pull that tube out 900 times a day. Her face would be raw from tape changes, skin would break down on her face and down her back (we'd tape the tube there so it wasn't flopping all around). It took both me and my husband to do tube and tape changes: swaddle her tight and she'd wriggle, scream, cry. Trying to get tape perfectly on a baby's face like that or a tube down the right way – doing it on a rabid alligator would have been easier. Plus the ports would constantly open and leak, it was a mess. But, within weeks of the tube going in, her weight was consistently going up, she was on the growth charts where she should be, and she was finally getting some chunk!

They told us when we left the hospital to continue with the thickened feeds, and whatever she doesn't finish, tube it. As many tubie parents will tell you, once an ng tube goes in, oral aversion gets worse extremely fast. For my daughter, it was a week. Not to mention, because she was only 5 months old, there were very limited options on what we could use to thicken her formula. 

She hated rice cereal. Our only option was Gelmix. Using Gelmix was like a chemistry experiment; it could only be mixed into a warm liquid. For us, from the time we mixed it into her formula, we had seven minutes to feed her before it became full-blown pudding. Within a week, she refused all bottle feeds and became a full-time tube fed baby. Once we saw that this was going to be a long term thing – because she had an oral aversion with silent aspiration and absolutely no cause behind it since every single test came back normal, and a lot of research and back and forth – we decided to go the G-tube route. 

It was hard. We were first-time parents, thrown into the medical world, and now we had to decide if it was worth putting our child through surgery (at this point, she had already been under anesthesia once in her short life) to put in a G-tube to make all our lives easier without having a definitive cause as to why she was aspirating. I researched it day and night, joined all the groups, got all the pros and cons, all the feedback I could. I was afraid of everything: complications, pain, how would she react to it, would it affect her daily life (she just started to crawl), were we making the right choice, what would people say. My husband was very resistant at first, which was fine, I couldn't tell him how to feel. But I did the research, I was scared, and because I was pushing for it, what if something goes wrong and it's my fault? 

She got her G-tube in April 2022 and started feeding therapy at the same time (along with physical therapy, too, since she was born with torticollis.) Looking back, feeding therapy was good for the first few months, but after nearly a year, things were going nowhere. In December of 2022, I took her out of feeding therapy. 

After her G-tube surgery, Mila recovered really quickly. She woke up from surgery, and a few hours later was okay, pain controlled by tylenol and motrin. We went home the next day! Physical therapy slowed down though. She may have only been about 6 months old, but she knew something was different and uncomfortable for a little while and crawling took a pause. But after a few months, she was back on her belly and life with a G-tube went on! 

From the first day home with the G-tube, it was a total game changer. No more tube being yanked out of her nose, switched every two weeks, blocked nasal passages, skin breakdown, traumatizing her with holding her down for NG tube changes. It took a few months for her stomach to settle into having the balloon inside, so we had to play around with what angle to lay her at for feeds, buying different chairs: Baby Bjorn for 3-9, maybe 10 months depending on weight; and the Fisher Price Infant to Toddler Rocker from 12 months on (the weight limit is 40 pounds so it's good for awhile!)

My daughter never really bothered with her G-tube from when she got it at 6 months old to now, at 3 years old. The only time it ever bothers her is after a tube change (which are SO EASY and painless) because she would develop granulation tissue. 

Fast forward to the fall of 2022, when we were referred to a pediatric ENT surgeon. We took her in for her appointment, gave him her history, and he did a quick scope in the office. He immediately said, "I cannot confirm this with just an office scope, but it looks like she could have a laryngeal cleft." My husband and I said, "A laryngeal what?" He told us it would be best to schedule a procedure known as a triple scope to officially confirm. It's a procedure where an ENT, GI, and pulmonologist work together while your child is sedated and basically check out their respective areas to see if there is anything wrong in the anatomy. 

She had her triple scope in December 2022. For Mila, on the ENT's end, she had a severe type 1 or mild type 2. GI said anatomically she was fine, pulmonology said the same. He took biopsies of lung tissue to do tests and didn’t find anything major except some bacteria that was normal for an aspirating child. During her procedure, her ENT did filler injections to fill the space of the cleft. He did this as a temporary solution. Two weeks after the triple scope, she would have another swallow study (her THIRD at this point – the first two were both fails). If she passed, it would be considered a conditional pass, meaning that her cleft would be officially diagnosed and we could go ahead and do a surgical stitch repair to fix the cleft and a supraglottoplasty to remove extra tissue that was extending into her airway. 

Now that smacked us in the face – ANOTHER surgery? This would now be her third time under anesthesia in her short life! This surgery also came with its own plethora of risks – the laser used in the supraglottoplasty could malfunction, the repair could not work, she might have to have it done again. They were rare, but there. But we knew we had FINALLY found the answer to what was plaguing our poor child's life and feeding since the day she was born. We had to do it for her best interest. 

She had the repair done in March of 2023. During this procedure, he also did the supraglottoplasty at the same time and closed her cleft using a few stitches that would dissolve. Two months later, in May of 2023, she had her fourth swallow study. She passed with flying colors. The radiologist said it was a beautiful swallow, and I keeled over in the waiting room and cried – I was so happy and proud. I was in that same exact room three times before in the last year and a half, every time hearing, "It's a fail,” and I would cry because I was so upset for my child. I heard the words “your child” and “failed” and felt like the worst parent on the planet. 

We saw her ENT the day after her swallow study. He scoped her quickly with the camera to check the repair, and said it looked beautiful. We could not believe that after everything we went through as a new family in the last year and a half, it was finally over. For the first time EVER in her life, she no longer needed to drink thickened liquids. The first time I gave her the sippy cup with plain 'ole regular thin water in it, I took a picture and posted it. No one but the parent of a tube fed kid with aspiration issues would understand the beauty behind that photo.

Once she was healed from the surgery, I was given the all clear to wean her off of her tube feeds. I was scared. But lo and behold, within three weeks my daughter decided she was officially done with tube feeds and was a fully oral eater! It was now the middle of October 2023, and we were about five months post-wean, with zero tube feeds! 

Mila still had her G-tube, and we were not planning to remove it any time soon. The reason for that was because she had struggled with constipation since birth, and once she became an oral eater, things had gotten much worse. The reason for that was because she was no longer strictly tube fed, so we couldn’t control exactly how many calories and the amount of food that went into her body. She was the one holding the reins on that, since we obviously couldn’t force her to physically eat as much as we wanted, or the exact amount of fiber or whatnot to keep her poop chute working on schedule. I incorporated as much as I could into her diet and whatever I thought she would eat to help her poop. Knock on wood: she’s been doing well in the poop department for months now.

From May to September 2023, she was fully oral. She ate everything, and was so willing to try almost anything we put in front of her. We actually thought for the first time since we had her, we were on the path to a “normal” life! Because my husband was the only one able to work, the responsibility of weaning her and cooking all her meals fell on me. That was obviously fine, but it meant a massive chunk of the emotional stress of her eating was on me (and I’m already a naturally emotional person as it is!) Every meal was emotionally difficult for me to sit through, because she wasn’t eating enough to gain weight. It was hard for the first time in her life to hand off all the responsibility of her eating “enough to sustain herself” over to her, at 2 1⁄2 years old. 

That summer in July of 2023, we took our first vacation together as a family, and our first time anywhere with her being fully oral. We went to visit family in Croatia, and I was terrified she wouldn’t do well. Not only was it her first trip ever, but it was international, and she was an oral eater for the first time ever. Lo and behold, she did wonderful. We went to restaurants and she ate. We made her food at home and she ate. Things were good.

Then when we got back, things started to slowly regress. We thought it was normal. At first, she would just want to eat her favorite foods, then she began to reject those as well, and I was dumbfounded. Nothing had happened that would make her stop eating, nothing physically traumatic. It was just like she woke up one day and decided, “Ok that was fun for a bit. I’m done.” 

An online weaning program that I had consulted with advised us to trust that Mila would know what her body needs. At first I was ok with that, since this was all new and I had to give her some power. But day after day, she would barely pick at food. I would sit at the table with her, watching her refuse everything, and cry because I didn’t know what to do. My mental health had absolutely TANKED. I had finally had enough.

In March of 2024, we reluctantly made the difficult decision to go back to full tube feeds. I felt so defeated, like such a failure. All that work and we were right back to where we started. I felt so bad for Mila. She worked so hard, and went through so much, but it just wasn’t working. 

In New York where we live, we were on the waitlist for feeding therapy for nearly two years before we got started. In August 2024, she was accepted into a program, and graduated in October 2024! She now has six foods on her oral roster and works on different ones as much as we can. She’s primarily tube fed, and eats orally simply for practice and pleasure.

She has speech delays, is on the spectrum, and doesn't communicate 100% with just words yet. So unfortunately I cannot tell her, "Please just eat so we can take your tube out," or “Please tell me if something hurts again and that is why you don’t want to eat.” For now, it is what it is. I am so proud of my daughter. She just turned 4 a few months ago and has no idea yet what a rockstar she is – what a warrior she has been from the moment she took her first breath. She has been through more in her first three years of life than most people go through in an entire lifetime. 

I don’t know what the future holds for her in terms of if/when she’ll get her tube removed. It could be years – maybe never – we don’t know. But I’m at that point in our journey where I’m just tired of everyone telling me, “She’ll eat one day, don’t worry.” Or, “Just put food in front of her, she’ll eat.” It’s just not that easy. And believe me, I’ve tried.

Mila was officially diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID) a few months ago, and is back to full tube feeds. We don’t know why she suddenly stopped eating and will only taste certain foods. But as long as she’s healthy and happy, that’s all that matters to me.