When my daughter Adrian had to miss a week of third grade for a surgery related to her cleft lip and palate, she wanted to put together a slide show for her classmates so they knew her story.
“When I was growing in my mom’s belly, my lip did not grow together like yours did. Neither did the roof of my mouth,” it begins.
Her baby picture was included too, which shows the stitches and bandages around her mouth and nose after her first surgery as a baby when doctors fixed her lip so it was easier to eat.
She also shared with her class that her brother Reid has cleft lip and palate too but he has bilateral, which means the splits are on both sides of his mouth.
Now 11, Adrian still talks about the facial differences she had at birth and likes telling people about her and her brother’s journey at C.S. Mott Children’s Hospital where both receive their craniofacial care.
It’s national craniofacial acceptance month and I love that my kids can embrace their differences, and educate others. I had a much harder time doing that – I was born with cleft lip and palate too.
When I was pregnant with Adrian and my doctor told me she had the same facial anomaly I did, I couldn’t help but worry. I wondered if she too would struggle being teased by peers or experience low self-esteem.
But Adrian put those fears right to rest at about age four. I remember vividly when a child at a restaurant made a comment about her little brother’s looks to which Adrian immediately responded “We are all different in our own way.”
Meanwhile, my 9-year-old son Reid, who is in the middle of some orthodontics work related to his cleft lip and palate, has jokingly said his buck teeth make him look like Mater, his favorite character from Disney’s Cars movie.
When I became a parent, I set out on a quest to protect my children and fill them up with so much self-confidence that no one could ever take it away. I didn’t want my children to feel the shame that I felt. What happened is that my children ended up teaching me the most about self-acceptance.
I never saw pictures of myself before my cleft lip repair surgeries. Back then, it was all about “fixing it” and no one was interested in the before pictures. I viewed my facial differences with some amount of shame. I felt fearful to meet my child during my pregnancy, but when Adrian was born that all fell away. I thought she was gorgeous, the most beautiful baby ever. I began taking newborn photos right away and continued to do so after her cleft lip repair surgery with Mott’s Dr. Steven Kasten when she got her “new smile.” I have a lot of pictures from before and after the various surgeries my children have had. It has been a great way to document their journey. What surprised me most after that first surgery, was how much we all missed her “first smile”.
Adrian has since had a bone graft at Mott, which required taking bone from her hip and putting it into her jaw where her cleft was. This procedure isn’t just for her appearance but to make sure that as her adult teeth came in, there would be bone there to support them. This is also important for speech. Today, you can barely see her scar. Reid will likely have the same procedure as he gets older. They are both in the process of orthodontic work and have several years of that ahead of them as well.
About one in 1,500 to 2,000 children have cleft lip and palate, when the roof of the mouth contains an opening into the nose. My kids had much higher odds – about one in 25 – because of their genetics. It can affect breathing, hearing, and speech and language development.
What’s great about Mott’s Craniofacial Anomalies program is that you have access to so many specialties at once. The team has experts from plastic surgery, pediatrics, speech pathology, social work, neuropsychology, dentistry, oral surgery, orthodontics, genetics, audiology and nutrition to make sure all aspects of Adrian and Reid’s craniofacial care is covered. We travel more than 400 miles one way from Escanaba in the Upper Peninsula for appointments, so it’s incredibly convenient that the kids can see all of the specialists they need in the same day. We are so fortunate to have a great pediatrician, dentist and orthodontist back home, and the team is wonderful about communicating with them so that they are all on the same page and can provide the best care for my children.
We have been coming to Mott since even before Adrian was born. Dr. Kasten and the team not only provide wonderful care, but they make the experience fun and the kids feel like they are visiting old friends. The kids love Mott so much that they are always looking for ways to give back. One year Reid asked for his birthday presents to be donations to Mott. The kids also collected money from book drives and lemonade stands to help the hospital that helped them. They tell me they want to help other kids have the same good experiences they’ve had here.
We feel lucky that our kids have gotten such great care by Mott’s craniofacial team so they can grow up to be as healthy as they can be. Dr. Kasten and the rest of the team have ensured us that everything that can be done to surgically help our kids is being done. Most importantly, they know they don’t need acceptance from anyone but themselves. I am so grateful to them for being the ones that ended up teaching me that. They’re beautiful inside and out.
Take the next steps:
- Learn more about Mott’s Craniofacial Anomalies Program.
- Follow the Craniofacial Anomalies Program on Facebook.
- Read a blog post and see a video about the program’s “Picture This” event.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.