Today I am sharing a story from a client of mine. This mama has dealt with a lot and I am hoping her story can help someone out there experiencing similar circumstances. When I met Courtney, her 14 month old son was waking hourly at night, taking 45 minutes to finish a bowl of purees (not able to handle solids) and not talking. He had every red flag for a tongue tie. But at 14 months this mama was still fighting to get a proper diagnosis and treatment. Instead, she was being told to sleep train her baby and night wean. Luckily, she listened to her instincts and was able to get help. This mama is a true supermom!
‘Our son was born at 39 weeks via cesarean section because he was frank breech, the doctors were very concerned about his hips but all that turned out to be fine, everything seemed great. I thought they seemed so thorough, but there was one thing they missed that changed the course of our journey this past 16 months. My son has seen about 7 different pediatricians, and they all failed to diagnose his tongue and lip tie.
We had all the classic signs, when he was first born he latched on great or so it looked great but it certainly didn’t feel great to me. The lactation consultants I was seeing said it looked great and to give it time, and it will be uncomfortable at first but it will get better after about 2 weeks so I took that and went with it.
The first sign was that it wasn’t just uncomfortable, it was painful to breastfeed my son, my nipples were cracked and bleeding and blistered. It did heal but the blistered stuck around off and on until recently.
The second sign was at his 8 week doctors appointment the doctor was concerned about his weight gain, she said it didn’t seem like he was gaining weight the way they’d like him to. Of course that was the last appointment we had with her as we were moving 3000 miles away, so under her advice she said to check his weight when we got to where we were moving to, from Washington state to Florida. Once we arrived in Florida, we took him right away and all of a sudden the pediatricians here weren’t concerned at all. He “looked healthy and was just fine is what we were told.
A third sign was he was having horrible reflux, he was upset and projectile vomiting after every feed from 3 weeks old and on. I was told this is normal and not to be concerned over it because his epiglotis was not strong yet and it is normal for young babies to have reflux and they usually outgrow it. I was not satisfied by that so I did some additional research thinking it was something in my milk that was making his belly upset so I first cut dairy out of my diet and it seemed that his reflux was not as bad so for the first year of his life I was dairy free and I thought that was the solution to our problems. He still wasn’t gaining really well and sleep was never good either, I thought it was normal, but he was waking up every 1-3 hours all night.
A fourth sign was that he was super gassy and preferred to be on his stomach to sleep, being so scared of SIDS we kept him in the bassinet next to our bed and bought the owlet baby monitor to put on his foot to monitor his oxygen levels and pulse. He slept on his belly from about 5-6 months and still continues to sleep on his stomach at 16 months, he has always preferred it and that is because of the tongue tie, his tongue hasn’t been able to maintain the proper resting tongue posture due to the tongue tie, undiagnosed tongue ties cause issues with sleep, feedings and speech.
Another sign was that our son was a very quiet baby as far as babbling, we have frequently been asked on flights if we took his vocal cords out as a joke because he was so quiet the whole flight… turns out the tongue tie made it difficult for him so he was very quiet.
Once 6 months came along we were so excited to start solids to see his reactions and he showed 0 interest in solid foods. We tried baby led weaning and he hated it- he couldn’t chew the foods or move his tongue properly to maneuver the food around in his mouth. At that point, we tried purees and it would take him more than 2 hours to finish 4oz of puree, we thought ‘ohhh he really just doesn’t want it or like it’ so we tried few other purees and then dropped it thinking maybe he just wasn’t ready for solids. We were told the old saying that “food before 1 is just for fun”, we learned the hard way that it is not just for fun, it’s for the micronutrients as well! After 4-6 months the natural iron stores in their body are no longer enough for them and they need it through their diets, we didn’t know this and sadly our son became anemic and at 11 months was diagnosed so we had to start him on a liquid multivitamin. That is also when we started feeding therapy.
From about 7-11 months before his diagnosis, his sleep gradually got worse and worse, to the point where he was waking up every 20 minutes at night and it would take sometimes 40-60 minutes to settle him back down every time. Again, we thought this was normal and maybe he was teething but it was not normal. After a blood test confirmed his anemia, the multivitamin started and his iron levels normalized and were healthy again around 14 months, but he was still waking up 8-10 times a night. I thought ‘okay something else is wrong, maybe he is just so hungry because he wasn’t eating well for solids and was just stuck on the breast all the time’ so with feeding therapy and more structured meals we got his eating to a better place but still not great. It was the feeding therapist that noticed he doesn’t have a lot of tongue mobility, his oral motor skills were lacking.
After 15 months of his life, we were finally on the right track to getting some answers, we took him to the pediatrician and said the feeding therapist is concerned about a tongue tie and the pediatricians continued to dismiss our concerns. So I took him to a specialist that knows a lot about tongue ties where it was confirmed that he does have a tongue and lip tie, and that the tongue tie was affecting his sleep, eating, and speech development.
I took him to a different doctor to get his tongue tie released at 16 months, and immediately we saw a huge difference in the way nursing felt way more comfortable, and he actually napped in the car for the first time since he was a tiny baby, he napped when we got home really easily and sleep has gotten a lot better he went from 8-10 wakes a night to about 3-5 wakes depending on the night as he is also working on molars. Now we are watching as he heals to see if his mouth breathing gets better.
But all of this has stemmed back to a tongue tie, so I think it is imperative that every baby gets evaluated by someone that knows exactly what they are looking for, because 7 paediatricians and 2 lactation consultants all looked into my son’s mouth and all missed his tie and a lot of our struggles could have been avoided. I am hoping this reaches the right caretakers and that it can help if anyone else is having similar struggles. Thank you!