Camilo is not defined by his cleft.

Again, a long break between blog updates, sorry about that. It's mostly Camilo's fault, as he has been keeping me busy with his business of being a baby. But it's also my fault. I knew the next entry I wanted to write about would be about Camilo's cleft and how his treatment has been going, but it has taken me a long time to get my thoughts and feelings in order. Let me back up a bit...

The days leading up to Camilo's birth were pretty hard for me. I was so anxious about seeing the cleft and making sure we weren't dealing with any other associated syndromes, I wasn't sleeping at all during the nights. His birth - and seeing the cleft we expected - was such a relief! We did have some neonatal confusion though: They told us that although Camilo had a unilateral cleft lip, that his palate was bilaterally cleft, but that the "other side" had only a small hole in the hard palate. Huh? What would that mean for him now? Then came the evaluation to see if Camilo had any markers for a more serious syndrome. One pediatrician was very concerned about Camilo having such a big head and for not having eyelashes and had a geneticist come for a consult right away.

Both of the diagnoses turned out to be wrong - it turns out that the extra "hole" in the hard palate is just the back of Camilo throat and that it's pretty common for doctors to get mixed up if they're not used to seeing clefts.  And of course, the source of Camilo's big head is MY big head - easily cleared up once the geneticist measured the circumference of my noggin. Also the eyelashes - Camilo has TONS of eyelashes, they just happen to be like mine: blond, stubby, and hard to see if you're used to Chilean babies with their venus flytrap eyelids! But what we DID learn after many, MANY doctors looked Camilo over is that he has a very wide cleft.

Camilo's wide grimace before we started taping.

I've asked the surgeons at the Fundacion Gantz (the cleft foundation) what this means for Camilo in both the short term (surgeries) and long term (speech and appearance) and the answer I always receive is "nothing." Although his cleft is very wide (2cm - almost and inch - from upper gumline to gumline), his results should be ultimately no different than any other baby with a smaller cleft, but it might take Camilo a couple of extra surgeries to get there.

Pre-surgical taping and hook results by the cleft foundation. You can see from the before/after molds of the roof of the mouth how the upper jaw line was drawn together, making the cleft smaller before surgery.

Since our first visit to the Fundacion, we've been following the pre-surgical "taping" in an effort to close the gap in Camilo's gumline before his lip surgery. (see previous blog post about the Dynacleft tape) The nose hook also helps to strengthen his nose around what will be its new shape after surgery.

First Dynacleft application at the Fundacion Gantz

Amazingly, Camilo doesn't mind the tape or the nose hook at all! He's not a fan of the actual application of the tape though, and it usually takes both Joan and I to keep him still and get him all taped up after a bath. Also the tape is designed to be used for 24hrs, but the Fundacion asks parents to try to stretch it to 3-4 days. But the tape gets wet with milk, little fingers stretch out or break the tiny, clear elastic strip that covers the cleft, or the tape collects every bit of lint, dog hair, and baby booger around! Well we can usually make it 2-3 days, but with lots of extra medical tape to reinforce the base tape - sometimes Camilo finishes those days looking like a mummy he has so much tape on his face!

Mummy-baby with FAR to much tape on his little face!

So now for me, the question is, is it working? Joan says yes. I say I don't know. I definitely find it easier to tape those little lips together, but is it because I'm better at my technique, or because they've actually grown closer together? Have I seen improvement of his nose shape? Yes. Have I seen his upper jaw come together? No. Is it worth it? I suppose so, but I miss seeing my baby's face just clean and beautiful as it is, not covered in hooks and sticky tape.

And that brings me to where we are now. Camilo is fine. In fact, he is more than fine. He is a totally normal baby that has no clue that anything about him is different. For the most part, I am fine too, but all of it catches up with me from time to time. Usually every time we leave the Fundacion, I have to cry for a few minutes in the car - I just get so sad and frustrated that Camilo has to go through any of this at all - that he can't breast feed, that he has wear tape and a nose hook, that his cleft is so wide, that he has to go through so many surgeries, etc, etc. But then I remember what the visiting docents from the Fundacion told me in the maternity ward the day Camilo was born: do not define your child by his cleft. He is a regular, perfect baby, just the way he is. So I wipe my eyes, give him an extra hug and kiss, and get on with the rest of our regular, perfect day. :)

I bet my cleft-baby has a wider smile than your cleft-less baby!