How we entered the Cleft Community: Below I wanted to share some of the feelings and details that I was feeling immediately after our cleft diagnosis. At the bottom, I share some resources to help connect you to the cleft community, if you are interested in that.
On our way to our 20 week anatomy ultrasound appointment I was a ball of nerves, and I told my husband, I know something is wrong. My husband tried to ease my fears reminding me that we had two uneventful pregnancies. I knew something was wrong pretty quickly, but I never yujought we would be receiving a cleft diagnosis. I’ve never started praying harder as when the ultrasound tech said, “I can’t find baby’s lip or chin, but maybe the doctor can.” It’s a blur, but I will never forget looking into the concerned eyes of a doctor who I had never met. It’s like I could see the words coming out of her mouth changing the course of my life forever with each word. And when I pleaded to her, “will my baby survive? Can they still live a healthy life?” She simply said, “we truly just don’t know right now. Let me tell you what we do know….
We know your baby will have a significant bilateral cleft lip, cleft palate and potentially a recessed chin. Lots of that is fixable, but the combination of them all and the severity makes us think there could be something else going on. We just don’t know. Let’s chat with a genetic counselor right now because there could be something genetic, or chromosomal going on.” Deep breath.
We walked down the hall from the ultrasound room to a room with an office. I truly don’t know how my legs carried me, how they worked, but I just looked at the floor and thought one foot in front of the other. We were instantly greeted over Zoom with a kind and helpful genetic counselor. She told us there is so much that they are still learning about clefts and that it could be isolated or apart of a larger syndrome. She said there were over 700 chromosomal conditions that were connected to clefts. That anytime something crosses the midline (a bilateral cleft) it has a higher chance they will find other things going on. We had a choice to make. To go home and process the news, or to opt for more testing.
We opted for more testing. But we went home for a few hours before it was time for our amniocentesis test. Neither of us cried because I think we were just in so much shock. I kept waiting for the doctor to take the wand and be like oh there it is, silly girl was just playing with us. I kept thinking this has to be a mistake. How does this happen? I’ve had two uneventful and easy pregnancies. We don’t have a family history of any anomalies. How does this happen? Did I do something?
My parents were watching our kids that day, and they instantly knew something wasn’t right when they saw us. My mom made me lunch, even though I felt like I couldn’t eat. My husband and I just held each other, prayed without ceasing, and waited for our amniocentesis later that day. We wanted a peek inside to help prepare our doctors to give our beautiful child the best support at birth. Our sweet #3 kicked the needle out during the procedure, proving to already be a warrior. I immediately called my sisters, to plead for prayers while we were waiting on the results, and to tell them we wouldn’t be able to make our gender reveal party that night. They warned me I may feel some discomfort after the amnio and I didn’t want to travel into Houston.
While we waited on endless tests, genetic screenings, and MRIs, the words of Mr. Rogers flashed into my brain, as it does when you are a former elementary school teacher. “Look for the helpers.” How could I find these helpers, these mothers who have been in my shoes? These women who had walked before me. And that still small voice, the same one who told me to delete social media two years ago said, on social media. Social media went from something that was a cause of a lot of my anxiety, to a solution to my anxiety and a glimpse into my new life. It became my safe space, my space to learn, and see beautiful cleft affected children and adults.
So I began to scour the internet to get a glimpse of what our life might be like, if we were lucky. The most beautiful wide smiles began to fill my feed. The strongest children and strong parents who support them through every bump, and u-turn on their journey. All different smiles. All beautiful smiles, all children, and adults, who are cleft strong. My worries began to fade, with every new mama that I connected with. They offered encouragement, advice, and shared a glimpse into some of their hardest days, so that my future hard days wouldn’t be so hard. I watched them packing for surgeries, so I knew how to pack for my daughters surgeries.
Packages began to show up on my doorstep with specialty bottles, books, items to help us through surgeries, and these magical blue discs. These simple discs turn Dr. Brown’s bottles into specialty bottles that allow cleft affected babies to suck with ease. These women were literally giving me the ability to feed my child. They were teaching me how to use the bottles so I could advocate for my daughter at the hospital. With their help we planned for a NICU stay, learned all about using a feeding tube, and what my rights are as a mother. They were arming me with the words to use get procedures covered by insurance all while being vulnerable through sharing their experiences.
They helped me find the words when no words seemed to describe how I was feeling. They just got it. They understood that it was impossible to know know what the future will look like for us. There was a lot of things I did not know, and could not know until her birth, but one thing I did know is that these band of mothers would be there supporting me, cheering me on and educating me every step of the way. I had found a network of women who were supporting each other literally and fearlessly around the world. Mamas advocating for their children, until their children can advocate for themselves. Mamas shipping medical devices sometimes around the world to other moms who couldn’t find access.
Another voice who lives in my head, Dr. Brené Brown, reminds us that, “We don’t have to do all of it alone. We were never meant to.” So here I am today, being that small voice in your head telling you that you don’t have to do it alone. Telling you that you can get through hard things with the support of others. Telling you that my daughter is fearfully and wonderfully made, and healthy as can be, just left my cleft mom friends said she would be.
How Can You Join the Cleft Community?
I want to encourage you to find a supportive community with whatever you are facing right now. It is so important to not go through hard things alone. We have a local Houston Cleft Mom Facebook group, and lots of states and cities have their own cleft facebook groups, so be sure to search those! Also, you can search for people sharing their stories on Instagram by searching #cleft on instagram! Send them a message, I know I love connecting with other cleft moms!
Resources: I’ll list out some of the cleft moms Facebook groups that are helpful to me! These groups are closed groups, but anyone who is a cleft parent/adoptive parent/guardian, cleft grandparent, or is pregnant with a cleft child is welcome.
- Cleft Mom Support Group
- Our Cleft lip and Palate Support Group
- Connect with me on Instagram, I love making new friends! There are lots of great people sharing on Instagram about their cleft story! My friend, Alyssa, is a cleft mom x2 and she shares lots of great cleft content on Instagram!
- Smile Train has a lot of great free resources and Cleft Con. They have an in person (free) event for people in the cleft community in July for Cleft Awareness Month and an online Cleft Con in the winter that you can join online! And you can watch the old recordings here!
If you just received a cleft diagnosis–I want you to know there is a whole network of people who want to help you! I wrote another post about 10 Tips if You Just received a cleft diagnosis. I’ve also compiled some helpful things to add to a baby registry if your baby has a cleft!
