Of all of the things I might have worried about during my pregnancies, a cleft lip and palate were never one. At 30 years old, I couldn’t remember ever seeing a person with one. My only reference to people with clefts were late-night infomercials for Operation Smile or other organizations helping children in third world countries.
We have no family history. I took no medication while pregnant. So when the ultrasound tech said “cleft lip and palate,” I felt the air completely go out of me.
The hour-long drive home that day felt extra long. I didn’t know anything about clefts but knew this baby would have medical issues, require multiple surgeries and maybe major speech therapy. I worried he would be “labeled,” especially since we live in a small town. I worried he would always feel less than, or not as beautiful, or embarrassed. I worried he might have other health issues. I worried and worried and worried.
I made calls, sent fruit baskets and pleaded with nurses at St. Louis Children’s Hospital, three hours away, to see a surgeon there who had created a new surgery. This doctor was also a proponent of the nasoalveolar molding device (NAM), a rather new technology that aims at reducing the number of surgeries necessary to correct the cleft and gives patients a better outcome, especially with their noses, which is often the “tell” for kids with cleft lips. It would involve daily tapings and weekly trips to St. Louis for adjustments. We knew it wouldn’t be easy, especially with a 2-year-old and 3-year-old already at home. But if it gave our kid the best chance, we were undoubtedly in.
Once we had our doctors and hospital on board, some of our fears turned from medical to social. Have you ever Google-imaged “cleft lip”? When you find out your baby is going to have one, it’s one of the first things you do. We did. And it was terrifying.
We live in a small town, but our social networks extend much further. I’m an active Instagrammer and use it to share some of the bright spots or funny moments in our daily lives. As a stay-at-home mom, I love to see what friends are up to and maintain some connection to “big people” when I’m surrounded by toddlers all day. I knew friends would be anxious to see our new one, but we were concerned with how our sweet baby boy would be viewed by our families and our friends. It wasn’t out of vanity but protectiveness. I feared people would react to him as we first did to those images on the computer — and that image would stick with him forever.
We were never ashamed or embarrassed, but the unknown is a very scary thing, and I wasn’t sure that social media was the kind of platform to introduce our child to the world. We decided early on that we would share pictures of him with only those very close to us until after his surgeries and when we felt ready.
We also spent a lot of time on Facebook trying to find other families that had babies born with cleft lips. St. Louis Children’s hospital had a private page just for parents like us and we visited that site almost daily hoping to find more before-and-after pics, which were the No. 1 things that eased our minds. Information is power, and we had so little. To see other kids who were healthy with minimal scarring was so promising, but despite how common cleft lips are (in the United States, 4,400 babies are born with one each year, making it one of the most common types of birth defect), we had a hard time finding many people posting pics, or current information at all. The cause of cleft lips and palates is unknown, though genetics and environmental factors are thought to play a role.
Over the months, as we assembled our team, my worry started to lessen. I have always had a solid faith but decided during this pregnancy that I could get bogged down in all of this worry and fear, or I could pray and put it in better hands. I looked at my kids, Grant and Stella, and knew they were going to love this baby and build up his confidence. I looked at our friends and community and knew they would support our boy. I looked at our doctors and knew, in my gut (and you know how those mama guts are) that we found the perfect team. I looked at Chad and I looked at myself and realized how much we would work to give him a solid foundation, open arms and an insane amount of love. I almost stopped worrying.
Then the day came. We met our little guy the morning of Nov. 24. The second I heard that cry, I cried. I felt a huge, indescribable sense of relief and happiness. He was here. He was healthy. And he was the most beautiful baby I had ever seen. We had been so worried about how others would see him. I had worried about how Chad would feel, how I would feel — but instantly we were connected, and the only way to describe him was perfect.
We had decided to wait to introduce him to our friends and family, both in pictures and in person, but when God gives you a baby as beautiful as Beau, you proudly blast that baby on Facebook and share him with the world.
We were blown away by the support we received. And our posts had one unexpected effect. A few days before Beau was born, a college friend learned that her third child would be born with a cleft lip, and like me, she was worried. But then she saw Beau’s pic on Facebook. She said seeing his picture calmed her — maybe because she didn’t feel so alone and in the dark the way we had. She reached out, and we talked and texted a lot. Her sweet girl is now working with Beau’s same doctors and surgeons.
A week after he was born, we started our weekly trips to St. Louis. The next four months were easily the hardest of my (and hopefully Beau’s) life. His NAM gave him sores, and the weekly adjustments caused discomfort. He was a good baby but required to be held upright, facing out and walked … all day. I think I wore treads in our wood floors from the laps I put in with Beau during those winter months. He ate very little at a time but wanted to eat every 2-3 hours around the clock. The re-taping each day turned his soft white baby cheeks red and irritated.
I wanted to quit the NAM several times and throw it out our kitchen window (and we came close some nights), but we reminded ourselves that these short months of discomfort would hopefully give him a better outcome for life. That “high school Beau” would be happy we did it. Meanwhile, we tried to care for Grant and Stella without being short with them from the lack of sleep.
At 4 months, Beau had his first of likely four surgeries. I had come to love that big ole grin he had during his daily one-hour break from the NAM. A part of me was devastated to see it go.
The next time I saw Beau, I hardly recognized him. He was swollen, shiny and looked so different. Two weeks with nasal stents and then he was free from it all. We are still astounded with the results. The scar is minimal and I think will make him look rather tough. And his nose is beautiful! Oh and that smile … that big ole grin has come right back.
Since that day, I’ve made my Instagram account public and started using the hashtag #cleftstrong on several of my posts with Beau — a hashtag I stumbled upon that revealed nearly 12,000 pictures. I’d always used social media for fun, but for families in our situation, it’s a vital source of information.
I’ve had other moms reach out to me and say that seeing Beau’s pics now bring them hope that their babies can be healthy and happy too; I’ve also gotten questions about delivery and potential complications. I’m happy to send out my e-mail address and have moms write me their concerns. It brings me so much joy to relieve any fears they may have.
My husband and I don’t want Beau to ever be labeled “the cleft kid” because he’s so much more than just a kid with a cleft, but I will continue to hashtag cleftstrong because Beau is cleft strong. He lives life happy and laughs big. He has a brother and sister who love him crazily and don’t see him as different at all. I hope that expectant moms and dads facing the same battle we are come across his pictures on Instagram or Facebook during their late-night Internet searches and see that his life is wonderful — and that he’s beautiful.