My sweet little boy Wyatt was born in 2016 with an undiagnosed bilateral cleft lip and palate. We weren’t able to meet with our cleft team until Wyatt was three weeks old, so we were a little further behind most parents in this situation. We should have met with them immediately but thanks to an insurance error (you can read about Wyatt’s birth here) we were not able to be seen until he was three weeks old.
First visit with the cleft team
At that first visit, our surgeon (who is amazing by the way) told us all about Nasoalveolar molding commonly referred to as NAM or the NAM device. It’s used to bring everything closer together before the first repair surgery to repair his bilateral cleft lip so that the surgeon can get the best results.
Our doctor believed Wyatt was a perfect candidate for the NAM because of his wide bilateral cleft and while my husband and I agreed that we should follow the doctor’s suggestion, we weren’t so sure about the cost.
So far we discovered that we had amazing insurance to cover all the various costs of having a cleft, but this was a voluntary treatment, so we had no clue if it would be covered.
Should we get the NAM or stick to taping?
We decided together that if it was covered we would go for it. But, if it wasn’t we wouldn’t be able to move forward with it. At a cost of somewhere between 5-10K (this was an estimate from our doctor), there was no way we could pay for this upfront.
To be honest, I hoped that the insurance would decline it. I didn’t want to do it. I made the mistake of watching a YouTube video of parents putting the device in and it made me really sad for my sweet baby.
I didn’t want to have to do what they were doing. Getting it on and getting it to stay in looked awful and the device looked awful aesthetically as well.
Even though I knew this was the best for Wyatt in the long run, I couldn’t help but focus on the short term. Would it hurt him? Would he hate it? Will it be a giant pain? How would I manage this plus pumping, plus taking care of two other kids who are currently suffering from jealousy and seriously bad attitudes?
I didn’t know the answer to any of those questions, but the decision was made for me when our insurance approved the device.
Using the NAM
We had the mold made and one week later we went back to the orthodontist’s office to have it fitted. Everything went smoothly while we were at the doctors…doesn’t it always though? No issues at the doctors but as soon as you get home you get hit with something!
Our feeding specialist was there to make sure Wyatt would take a bottle with the NAM in and sure enough, he ate like a champ! They provided me with all the supplies I needed, gave me my instructions and sent us on our way.
Later in the day Wyatt definitely seemed uncomfortable and was crying more than usual. I gave him some Tylenol and that seemed to do the trick. We were fortunate that he seemed to adjust fairly quickly to the NAM and that was the only time I can remember giving him pain meds because of it.
This thing is so frustrating!!
Having to keep up with the NAM on a daily basis was incredibly frustrating. I’d say I had a love/hate relationship with it. I definitely shed lots of tears during the three months that he wore it.
Typically every morning the NAM would be lying beside Wyatt in his bed. It would either fall out on its own or he may have been knocking it out himself with his little fists. Either way, I had to get that sucker back in fast, because he would no longer eat without having the NAM in.
This was great because it made his feedings so much easier! But on the flip side of that, it meant that in the mornings he was starving for his bottle and I had to attempt to get the NAM cleaned and inserted while he was screaming with hunger. This is where the tears come in!
Getting the NAM in just right and having it stay in is an art lol. You will get really good at it but my biggest piece of advice is to not rush it! Any time I rushed it would not stick and I would have to start the whole process all over again – which was no fun for either of us.
We had the NAM in for about three months. We were supposed to have it longer but I opted to stop using it when it suddenly started causing Wyatt pain. We went and had the nose stent added (see picture) and after that, he just wouldn’t tolerate it anymore.
He began to cry and scream every time I put the NAM back in which he hadn’t done since the first day. At first, I thought it was the nose stent so I went back to the orthodontist and had it adjusted. He also smoothed it out again to make sure there were no rough spots that could be causing the pain. Unfortunately, this didn’t help. Wyatt was only happy when the NAM was out.
I contacted my cleft surgeon and he told me it was my decision to stop treatment and I had to do what I felt was best for my baby. We had already seen great results from the NAM plus I didn’t want to see Wyatt in pain, so I decided it was time to quit.
Quitting the NAM
This was such a freeing decision for me! Being able to have the NAM was a blessing, but it’s tough! Plus, I missed seeing my baby’s face without the NAM in. He was so adorable and I felt like the NAM was always getting in the way of seeing his handsome little face.
After we stopped using it, I figured out what was actually causing the pain. Wyatt was teething and there was a tooth coming in from his premaxilla. The NAM rubbing against his sore little gums must have hurt a lot!
Would I do it again?
If I had to go back I would 100% use the NAM again. The results we got from it were truly amazing and it made our surgeon’s job a little bit easier (according to him). It’s a lot of work, and it can be very frustrating, but in the end, it was all worth it. It was such a small part of our lives and yet it had a huge impact.
I would encourage anyone who is contemplating getting the NAM to move forward with it if possible. The positives definitely outweigh the negatives!
I’d love to hear from any other cleft parents. If you have any questions please feel free to reach out to me via a comment on this post or through the contact form.