The Cleft — 6 months and counting

By popular request, some before and after pictures of Maya’s cleft lip:

Maya in utero (3-D ultrasound of cleft [and foot]) and at birth (May 2006)

Maya the day of her surgery at 5 months and now, post surgery, at 7 months.

I wanted to post these pictures to the web all together for those who come to this site specifically for cleft pictures. I do this because I think that in many ways it is difficult for parents of children with very minor clefts. When we found out Maya had a cleft, we got a lot of “worse-case scenario” literature, with pictures of extremely deformed clefts and very few really clear “before and after” pics. I can’t tell you how many times I heard, “They do really great stuff these days…” but there were few pictures of repairs that involve unilateral incompletes like Mayas. I think most clinics go in for the shock value, or they are worried about giving false hope or something. Anyway, here’s the real deal, and let me tell you straight up, Maya has a noticeable scar. Most people think she has a raw nose, the kind you get from a cold, because it’s kind of red. I don’t know how the scar will look in a few years — we’ll just have to wait and see. But even a minor cleft does leave a scar. That being said, I don’t think this is going to really cripple her life, socially or otherwise, and I am constantly surprised how many people don’t even notice it.

These days, I hardly ever think about Maya’s cleft at all. I know there are a lot of emotional posts on this site, and yes, it was hard to deal with at first. I thought Maya would somehow be…inferior. But I don’t think that anymore. From the moment I saw her, I knew she was amazing. The doctor describes her as “vigorous,” and let me tell you, there is a lot of determination in that little girl. We expect her to solve global warming and bring about world peace any day now.

Here’s the best advice I received about Maya and her cleft, and I will pass it on:
Pick a really good surgeon. Go to a different city, get on a listserv, read the forums. The surgeon we got did over a hundred clefts a year, and many good people actually discouraged us from traveling 100 miles to go to him, whereas the surgeon here in our city only does 5 clefts a year and in hindsight was a bit clueless about clefts in babies. Because the doctor we picked, Dr. Beals, was really excellent, he also worked with a really excellent pediatric anesthesiologist. Working with pediatric specialists was absolutely wonderful, and changed how everything happened post-surgery. Our original surgeon wanted us to dropper-feed Maya for 10 days after surgery and said her nose would never be normal. Dr. Beals said dropper feeding wasn’t necessary (and he was right) and Maya’s nose is slowly changing shape and becoming more regular as she heals and continues to grow. It does not look like she is going to have a flat nose at all. We saved ourselves a lot of grief and worry by switching surgeons.

Get counseling. Really. Maya was our second child and I knew that it was going to be tough, so I did some pre-emptive stuff to keep myself from going over the edge. First of all, I forgave myself for whatever I may have possibly done that could have caused the cleft. I learned how to tell people, kindly, that “It’s not my fault,” when they asked, “So what is the cause of this?” because in truth, that was their question. I allowed myself to take anti-depressants. I got involved in stuff that is not directly related to my kids, because all this? It is too much stress. It is too much of me, without any me left to go around. And the world? The world does not revolve around me and no one is going to die or grow up to be a criminal if I go for a run or catch dinner with my husband every once in a while.

For those of you who have come to this site for cleft pictures, because you or someone you love has a child with a cleft, I hope this site helps. I know I wanted all the information I could possibly get when I found out about Maya, which is why we got the 3-D ultrasound done. I didn’t want to be frightened by her face. But when she was born, I couldn’t stop crying, because her face — it was the most beautiful thing.

It’s hard to believe but some days I miss her little notch. It gave her a lot of character. It made her a little different. And it was hard to accept that I needed to scar my own child. But however she looks, she is incredibly special to us — and always will be.

Good luck and I hope you enjoy the photos.