Cleft Education

The first thing I would like to say about Ethan is that he is the happiest baby I have ever known. He started laughing when he was just a month old and at two months he squeals with glee when asked if he is funny.

This post is really about sharing the information I have received so far on cleft repair. I will cover all in detail as we go through each step, but I will cover the high points here. I am happy to answer any questions about Ethan or the process he is going through. If someone has a question I do not have the answer to, I will find out.

So, what does a complete bilateral cleft lip and palate mean? Ethan does not have a roof in his mouth and his upper lip, under his nose, did not attach appropriately to the rest of his upper lip. What issues does this cause? The main issue for now is with feeding, since his upper lip is not attached, he cannot form a seal on a bottle and therefore he cannot suck (he definitely cannot nurse), even though he tries his hardest! Later in his life he will likely need some speech therapy, but this point seems minor to me. To overcome the feeding issue we used a special bottle called the Haberman bottle. The Haberman bottle has a very long nipple and instead of sucking on the bottle, we actually squeeze the nipple rhythmically while Ethan sucks. Unfortunately, when we squeeze a little too hard or not hard enough and this throws him off a bit.

Next, what are the steps to fix Ethan's cleft lip and palate? I am learning as we go, so I am sure some of this information will only be partially accurate because each child has a little different path.

1. Newborn - He will get a Naso-Alveolar Molding (NAM) Device. This should help him have more normal feeding patterns and also help move his pre-maxilla (the piece sticking out under his nose) back to the position it should be in.
2. 3 Months old - He will have a surgery to repair his lip and nose. During this surgery they will put tubes in his ears to keeps him from having ear infections. Ear infections are a very common problem for cleft palate babies. Luckily, Ethan has not had any ear infections yet.
3. 9 - 12 Months old - He will have his second surgery to close his palate.
4. Around 5 Years old - He will get a palatal expander that helps shape and widen his upper jaw arch and helps set-up his palate for his bone graft. He will start speech exercises as necessary and have hearing evaluations.
5. Around 7 Years old - Ethan will have a bone graft to fill in the dental ridge.
6. 7 - 12 Years old - Ethan will have Orthodontic treatment.
7. From 12 Years to final growth - If needed, they will perform additional surgeries to adjust his lip, nose, and scar. During this time he will likely need more Orthodontic treatment.
8. Around 18 Years old - This should be his final surgery and it is to his jaw. About 20-30% of cleft patients need this final surgery.

So that's the brief version of what lies ahead of my sweet Ethan. As each of these phases comes up I will have a better idea of what each step entails.