Thoughts Before, During and After Mia’s Cleft Lip Surgical Repair

BEFORE MIA’S CLEFT SURGERY

We didn’t know she would have a cleft lip. When they put my daughter on my chest after birth, the first thing I saw was the triangular space that separated one side of her lip from the other. It was the moment I fell in love. That’s the part they can’t explain to you – even if you’re given the diagnosis through sonograms and counseled about clefts during your pregnancy, no one can prepare you for how much you will love that smile. How your heart will melt for the asymmetrical curve of a nostril or the gap that spreads every time you make her laugh.

That is also the moment I felt all the fear and responsibility of being the mother of a cleft affected child. She was so tiny, so fragile, with her head nestled there below my chin. In the midst of wires, machines beeping, and the bright lights above my bed, all I could think about was the journey ahead and how I could best support the little life I’d carried inside me for nine months.

DURING MIA’S CLEFT SURGERY

Every mother can agree that time moves too fast, and my daughter, Mia, was four short months old when she went in for surgery at Cincinnati Children’s. I had complete faith in Dr. Pan and the cleft team.

I knew Mia’s surgery would be a success. But that doesn’t mean I didn’t hold her a little tighter before handing her to the nurses who carried her back to surgery. Or that I didn’t want to run down the hall after them and take her home to the comfort of our porch where I could sit with her on the swing until she fell asleep.

This is what I remember: sitting in a waiting room, watching a monitor that followed the progress of her surgery, thinking about that beautiful cleft and every time she’d smiled in her first four months. I knew she was getting what she needed, but part of me grieved for what I was losing. I knew it was selfish, but that cleft was part of my little girl. It was part of every memory I had of her. As much as I wanted her to have the surgery, I also knew I would miss seeing her the way she’d always been. I loved every inch of her, and that included her cleft.

AFTER MIA’S CLEFT SURGERY

After cleft surgery, it was almost like seeing her again for the first time. So much of what I knew my daughter to look like had changed. Her nose was small and cinched tight. A dark scab had already begun to form down the suture line from her nostril to her lip. Her eyes were heavy from anesthesia and the smile I’d handed over to the nurses was absent from her face. I cradled her and allowed the nurses to show me how to comfort her with an IV still attached to her tiny hand.

Our biggest hurdle came after we brought her home. We thought, as in most cleft surgery cases, that a night in the hospital was all we would need to get Mia on track for a quick recovery, but we were wrong. The pain was too much for her and she refused to eat. I did everything I could to feed her with the syringe the way they showed me in the hospital right after surgery. But Mia refused to drink, turning her head and crying from hunger and discomfort. We called the doctor on call and asked him what we should do. He was calm and kind. He said we needed to bring her in.

Because she had refused to eat, Mia was dehydrated. I will never forget the night my daughter lay on the table in an emergency room. A blanket covered her exposed skin while the vascular team used a sonogram machine to locate a vein in order to give her fluids. I wanted to hold her and make everything okay. I wanted to feed her and fix the hunger I knew she felt. But I couldn’t do those things for her. That’s why I am forever grateful to Cincinnati Children’s for supporting my family and taking care of my daughter when I couldn’t give her what she needed.

MIA TURNS ONE

My daughter is almost one, and her recovery from cleft surgery was nothing like we expected. The hospital told us how to prepare for surgery, the most likely scenarios, but no one can really prepare a parent to watch her child in pain or how to cope when things don’t quite go as planned. But those days that I held her at home and fought with the arm restraints that kept her from pulling on her stitches and watched as her scabs fell away, I fell madly in love with the new smile she was given. I will never know if it’s the smile she’d have been born with had she not been cleft affected, but I see my husband in the way she grins and myself when her smile spreads to a laugh.

We know there will most likely be more surgeries in Mia’s future. There may be lip revisions or oral surgeries to help her as she grows, but the fear is gone. She’s shown me for 12 months how strong she is. And in addition to Mia’s strength, we have the best medical team. I trusted them with my daughter’s smile eight months ago, and I will always be thankful for the work they do for cleft affected kids.

Especially mine.