Our journey with tongue and lip tie reversal in toddlerhood: Part 1

Take a deep breath, it’s not that bad. The pain will go away, after all the nurse said it’s normal. Oh no, that pain is not going away. If anything, it’s getting worse and worse with each latch.

That was me, trying and trying. When the nurse came in to tell me that one of my medications I took for my Crohn’s Disease was not breastfeeding safe, it took me less than seconds to say “Alright, can we have formula”. I regret that. I wish I knew what I know now back then.

I have gone back and forth on sharing this journey with you all. I know I’ll probably get criticized or told “oh he can just live with it”. But see the thing is, he shouldn’t have to. Yes it is nothing big thank goodness and besides this, Macyn has never been sick or had any medical problems… But what if in 10-20 years he begins having migraines? What if he continues to have a terrible gag reflux and isn’t able to do the things he loves like running and playing sports? What if he has dental problems or gets teased because he has trouble pronouncing certain letters like N? See when our son was born I was young and had no idea what a lip or tongue tie was. The lactation consultant looked at him the first few hours after he was born after I literally cried in pain and said “Nope he is fine”. But see, lip and tongue ties don’t just hurt the chances of successful breastfeeding. Our son could only take one bottle. All others he wasn’t able to suck properly and would cry until we gave him his MAM bottle, which was unlike him completely. He was a sweet, quiet baby. As he began to grow, he would throw up from drinking or eating to fast. Even running or laughing would trigger his gag. We brushed it off as a severe gag reflux. The older he got the more I noticed he couldn’t pronounce certain words and struggled in expressive language. What could it possibly be? After months of debating, I began researching. Talking to doctors and therapists. Observing him and how his mouth moved, or the lack of. One day as I was brushing his teeth, he was not even 2 1/2, it dawned on me. He had a lip and a tongue tie. But everyone had always said it was no big deal, so could that really be the problem? After months and months of more searching and talking to other mothers I was determined to get an opinion from his doctor. Before that we had not just one but three speech therapist do a full evaluation and all of them came to the conclusion that he was advanced in receptive language but behind in expressive. He had a visible oral muscle delay and after speaking to each of them separately, all of them came to the determination that they each believed he could not pronounce certain letters due to his ties.The last therapist we met with urged me to fight for a reversal. He was now three. I felt hopeless knowing by this age many doctors would turn my concerns down and not even give a second thought. At his three year check up which happened to be a bit after his actual birthday, I pushed for us to be sent on to the ENT for a final decision if it was needed or not. To my surprise, she finally agreed. Two and a half months later he finally saw the ENT. Not only did the ENT agree that Macyn had them, but said that it was very necessary for him to get them fixed. So here we are, having our three and a half year old get his lip and tongue ties fixed. It’s a much more complicated procedure than it could’ve been 3 years ago but I am hopeful. If he would have had them done when he was younger, it would’ve been quick in the doctors with no extra procedure. Now that he is older and the degree they are, he has to have a full procedure at the hospital. But just like the doctor said, it is needed and the benefits could be life changing for Macyn. We are hopeful it will help him and give him a better ability at not only moving his lip and tongue(he can’t even get his tongue to the roof of his mouth), but also reduce his gag and constant worry of getting sick from simply running or laughing due to the way his mouth takes in air.

If I knew what I know now, I would have pushed the doctors when he was first born. I feel as though it would have made a world of difference for not just him, but for us. Lip and tongue ties are still not talked about as much as they should and so many doctors push them to the side. They can have many long term effects that can be fixed with a simple clip when caught early enough. Our sons procedure is coming up and I am so excited to see what a difference it makes.

Long term effects of lip/tongue ties:

•Migraines and head aches

•Speech delay/impediment

•Hyperactive gag reflux

•Dental hygiene and development problems

•Inability to breastfeed

•Difficultly eating certain foods

•Breathing problems

Many doctors brush it off but as more research and knowledge grows, it is very evident that finding is a child has ties early on is important. Some may have them and never have problems or have mild problems. Some may have them and have all of the symptoms. Either way, it is important to know and treat as soon as possible. I wish we had doctors that would’ve listened 3 1/2 years ago when our son was first born but we are also thankful to have an amazing doctor that cares and has the experience in this. If you feel like your newborn or child could possibly have a lip or tongue tie, please ask your primary care physician to refer you to an ENT or specialist that has more knowledge. Lactation consultants are amazing but the ones I dealt with were not experts in the area and blew us off. You are momma(or daddy), go with your gut!

Stay tuned for part 2 on our journey after getting our toddlers lip and tongue tie clipped.

Xoxo

Christian Mulkey