Mistakes and responsibility

It was 6 weeks ago today that my 8-year-old Moira had an alveolar bone graft. This was by far the most intense surgery out of the many she's had since she was just 5 months old. My daughter was born with a cleft lip and palate.

My husband and I were of the rare group lucky to learn their unborn baby had a cleft. With this information, we were able to use the final 2 weeks of gestation to prepare ourselves, and mourn the loss of our ideal. It was a harsh blow. No parent wants their child to be anything less than perfect, no matter how delusional that may sound. And honestly, I was afraid of the ugliness of clefts.

When we were told what the doctors saw in the ultrasound, I flipped out. I thought it was the worst thing ever! Having a couple of cousins with clefts, I remembered different surgeries they went through, the scars on their lips, the language still used to describe them, and the ignorance of people who encountered them. I was so angry that I would have to deal with this.

But as the days passed, I grew more calm. I would lay, soaking in the bathtub with my arms around my belly and tell my child I loved her and couldn't wait to meet her. I would cry with fear that people wouldn't love her, that they'd be frightened or startled by her, that they'd use ugly words like "hair lip." I was so scared that she would grow up feeling like something was wrong with her, that she was less then.

So when it came time to bring her into this world, my husband and I had progressed through many stages of grief over the loss of what we'd expected and were pretty psyched to meet who we were being given! And she was fabulous from the moment she entered the world! And so tough! Being born with a cleft means you're going to have a lot of surgeries over the course of your life, most of which will occur before age 18.

At 5-months-old, Moira's lip was closed. At 1 year, her palate was closed. At 3-years-old, a hole or "fistula" opened in the soft palate so a skin graft was taken from her hip to close that hole. Then back in late August of this year, a piece of bone was taken from the same hip and grafted into her hard palate.

Her surgeon told us that the procedure couldn't have gone better. That if a perfect surgery could be had, it just did. He then drove home the importance of oral care, basically warning that if the graft failed to take root, it would likely be failure to keep the mouth clean or be the result of trauma to the face.

I thought we'd been careful. Super sensitive to teeth brushing (at least 4 times a day). Hyper vigilant with teachers that she be suspended from P.E. and recess. What we failed at was the diet. At about 3 weeks post-op, Marty and I allowed her to start eating soft foods. Foods like plain hot dogs, cut up, and soggy, microwaved chicken nuggets. Why I thought these would pass as "soft" I don't know. I have since learned that these foods are classified as "hard" and shouldn't be given until 6 weeks post-op.

This goes beyond your run-of-the-mill "oops." This was a fuck up. And this massive mistake may have cost Moira another surgery.

Last night, as I sat listening to her read, I heard it. I heard this nasally whistle of a sound that only happens when there's a fistula in her palate. My heart stopped. "Moira? Is your hole back," I asked her. "Yeah. I noticed it this weekend."

My husband and I immediately grabbed a flashlight and, yup, there's a hole up there. In fact, we can see the front of the hole above her gum and the back of the hole in the hard palate behind her teeth. I felt so numb and helpless. Still do, in fact. But let's not forget the overwhelming sense of RESPONSIBILITY. To play the "if only" game is stupid, but it's how I feel right now: stupid that a hot dog or nugget would pass as "soft."

So today, after numerous messages left with her surgeon's office, I finally got through to a receptionist at 4 o'clock. When I told her that I "heard" it, she freaked out. "Oh my God. I'll get Dr. John and have him call you right away."

Turns out, Dr. John's in China, but he wants us seen ASAP by his attending. So tomorrow we head back to the hospital, expecting no work to be done other than charting a new course of action.

I just fear all that is unknown until then.