On having a baby with a cleft

 We had three and a half months with baby Donny before his cleft repair surgery. We memorized every detail of his lips, the way he would close his mouth and blow through his cleft. When he smiled his whole face lit up, and you couldn't not smile or laugh. When his surgery date got closer I couldn't help but think about how much I was going to miss him just the way he was. We would hand him over to the nurses and a few hours later have him back in our arms looking different. Similar to the way we missed how Bud could raise his eyebrows up to the top of his forehead in surprise before his surgery because he didn't have the proper facial structure in place. Things that they would want changed when they are older, but still things that we LOVED about them.

All the worrying I did before he was born about needing to protect him from people that would make fun of his lip was really for nothing. We had a few comments from people, never people we knew, but sometimes strangers would come across as rude, probably not intentionally, more out of curiosity. For the most part though everyone was very kind and more curious than anything when they saw his cleft.

When baby Donny was a few weeks old I took him to see a dentist that works with Children's Hospital. I didn't know what to expect at that first appointment but I figured since Donny didn't have a cleft palate, just a big notch in his gums, this appointment was a formaility.

Turns out I was wrong. It was an emotional appointment. I've since learned that this dentist is kind, knowledgeable and incredibly well meaning. It sure didn't feel like it at the time though. He hooked us up with this interesting contraption, which I didn't expect, but also the reasoning behind it was not explained to me. It turns out that in the first few months after birth cartilage can be taught to hold a new shape. Donny's nostrol was collapsed so this little nose hook was supposed to hold his nose in its new shape until his surgery. It looked interesting, it was always falling out and poking him in the eye, and I thought he was pretty cute without it. We listened to the dentist but I sure didn't want to.

To make that appointment worse, a mother of another child getting dental work was unintentionally being rude and making comments that I am sure she meant well in, but they sure didn't come across that way.

The next few appointments weren't so great either, but they got a little better each time. Maybe I just was able to rearrange my expectations.

Donny had his surgery when he was three and a half months old. Thankfully my sister was able to capture some really good photos of his smile before surgery. They are still up in his bedroom.

 

The surgery only took around two hours, and within an hour after that he was back in my arms. He looked incredible. He wasn't thrilled, but he looked great. As he healed he would try to blow air through his lip like he used to, and then look a little confused as to why it wasn't working.

He will have some pretty decent dental work in his future, and possibly a bone graft to repair his gums, but we are not worrying about any of that right now.