1 in 700

“A “cleft” is a split or a divide. Cleft lips and palates happen before birth. A baby can have a cleft lip, cleft palate, or both. A cleft lip may be on one or both sides of the upper lip. The split may also be in the upper jaw and gum.

A cleft palate is an opening in the roof of the mouth. The front part is the bony hard palate. The back part is the soft palate, made of muscle. A cleft palate can be on one side or both sides of the mouth.

A child can have a submucous, or hidden, cleft palate. This happens when tissue, called the mucous membrane, covers the cleft. It is the pink tissue that you see in your mouth. The cleft may be hard to see, and you may not know it is there.” – ASHA

Liam has a bilateral cleft lip and a complete cleft palate. Meaning he has two “splits” in his lip that go through his jaw and gum all the way to the back of his palate. A complete palate means that he is missing both hard and soft parts of his palate. If you look at the picture below, Liam’s cleft is the last picture on the right. Our doctors say his cleft is an isolated case being that it does not run in our families.

When Liam was born his cleft measured 17mm apart which is bigger than your “average” cleft. Because of how severe his cleft is he has no suction what so ever. This means he cannot breastfeed, he can’t suck a pacifier, he can’t even suck a nipple from a bottle. So I exclusively pump for him so he can still get breastmilk. We have to use special Dr. Brown’s bottles that are specifically made for cleft babies, sometimes even syringe feed him (I’ll go more into detail later in this post). They look like your average bottle right? Well there is a small blue valve that you put at the bottom of the nipple that allows the milk to flow without needing suction. We often get questions about them because many have never seen milk just sit in a nipple before, so many are fascinated once we explain why!

I’m sure you wondered why he has all that taping on his face right? One is his Dynacleft tape for his lip, one is his nasal elevator, one is his base tape and the fourth is his NAM tape. Most of the questions I get are about his tape so I’m going to explain what each one does for y’all!

This is what we refer to as the base tape. All the other tape has to be changed daily and really rips his skin to the point of bleeding so this is meant to protect his cheeks. The base tape can be left on his cheeks for about 4-5 days before having to change. Even this tape tears his cheeks up & it breaks my mama heart.

Caution: it’s sad to see.

You’ve probably noticed in all my pictures that he’s ALWAYS wearing mittens… well this is why. Because if not he rips his tape off and this happens.

Here is the Dynacleft tape. This prepares the lip for surgery by pulling the cleft together as much as possible. We started this taping the day after he was born. He has to wear this 24/7 until surgery. When the surgeon first showed us how to do it Liam was not a happy camper. What newborn wouldn’t be upset getting tape all over their tiny face? But let me tell you, he adjusted so quickly to this! I was so shocked but so so proud of him! We are blown away with the results! Look at the difference in just a short amount of time!

Okay so next tape is the nasal elevator, sounds kinda scary right? This is the easiest taping. It is used to help shape his nostril. Often with cleft lip especially with how wide Liam’s is, the nostril will collapse and flatten. This has a hook that you hook into the nostril which holds it up and helps improve the nasal symmetry. It also facilitates nasal breathing. As you could imagine, he is ALWAYS ripping the hook out. I consider putting his hook back in his nostril a full time job at this point! Unfortunately Liam will have to wear this after his lip & nose repair surgery. He will need to have at least two surgeries to repair his nose completely. When we first started this type of taping I really didn’t think it would work. I thought “How can this really help his nostril? It’s just a hook.” Within ONE week I had so many people telling me how great his nose looked. I couldn’t believe how well it worked! It’s a little difficult to capture the difference in a picture but I tried!

Last but not least, the NAM tape which holds the device in place. This tape we have to hand make every single day. You are probably wondering what the NAM device is huh? Here’s what it looks like..

We absolutely HATE the NAM.

MORE. THAN. ANYTHING.

It has caused our sweet boy so much pain. We cannot wait to be done with it!

Okay so the NAM.. (Nasoalveolar Molding Device) It’s very similar to braces. If you think about braces, they are pulling teeth closer together. That’s what the NAM is doing… pulling his palate, lip and nose closer together. He got this a week after he was born. This is worn 24/7 and can only be out of his mouth for 15-20 mins to prevent his palate from moving apart again. We have to go once a week to get it adjusted 2 hours away from where we live. Liam absolutely hates his car seat so you can imagine these car rides.. During these appointments they adjust the NAM to move another part of his palate. So every week we are pushing another part of his palate closer. Can you imagine how painful that is for a baby? BUT it will be worth it in the end for our little guy. It will make surgery “easier”. We take it out once a day to clean, maybe twice if needed. Liam absolutely HATES getting it put back in. He screams and screams and screams. It’s the saddest thing ever. Many parents have given up on the NAM because it is so hard to watch your baby go through this. I cried and cried for the first week and begged my husband to quit it. But we stuck it out and are a week out from surgery. Many kept telling us “it will be worth it, he won’t remember anything” and I couldn’t help but get frustrated hearing this and want to scream “you have no idea what we are going through!” Because no one really does unless you have a baby that has or had a NAM. He will go 10-12 hours without eating because his mouth hurts so bad, cry for hours, we have to syringe feed him and sometimes he still won’t eat that way. Feeling completely helpless and even guilty because you decided to do the NAM. When Tylenol doesn’t even touch his pain.. This has by far been the hardest thing for us. But needless to say, it is worth it because our little man’s cleft went from 17mm to 6mm! THAT IS AMAZING!!

1 thought on “1 in 700”

  1. I appreciate this post so much! My son has a NAM we are on week 8. We’re going this week to get another made because his current one cuts up his lip so bad. I want to quit so bad, i cry just as hard as he does after appointments and during cleanings. I doubt and question myself every single day, more so right now because it’s been out since Friday because his lip is so bad. Anyways, this is encouraging to me. Thank you so much. You are strong and amazing and that shows through your son!!

    Like

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