She will look a little different. She has a cleft lip and palate.

My daughter, Ella, is almost six months old. She was born with a complete unilateral cleft lip and palate, undetected in two ultrasounds.

I was in labor a long time. Before she was delivered, my doctor said,“She will look a little different. She has a cleft lip and palate.” I cried and apologized to my husband. I wanted to know what I did wrong.

The staff was very supportive, but I don’t think there are a lot of children here with clefts.We were told she would need to have plates in her jaw to close her cleft and bring her cheekbones in.

Only one nurse was comfortable with the feeding. She came in with a flashlight in the middle of the night and asked, “Did they show you her cleft palate?” She opened the baby’s little mouth and shined the light in.What a big help with feeding that was! But an ounce of formula still felt like forever.

I called and told my mother who lived an hour and a half away.When she got to the hospital, I remember handing her my baby girl with the cleft covered in a blanket. I was scared to death to take her home.

Our first visit to Dr. Canady in Iowa City was overwhelming.A mother with a teenager stopped me and said,“It will be okay, Mom.” Seeing her daughter sitting there—typical teenager in jeans, flip flops, and braces— was amazing! The visit with the team…wow! Thank God my husband and my father were there! I was like a zombie. It was so much information to take in.

At one point, I broke down crying and left, so no one would see me. How could they be saying all of this? When I was at home with her, it was like the cleft wasn’t there. She was too perfect. I wasn’t in denial. I knew she had a cleft, but it wasn’t until then that the reality of it all set in. One of the doctors met me outside and asked if I was okay, and I told her how I felt. She let me know what I was feeling was normal.

My second visit I looked forward to seeing the little cleft kids! A mother with a gorgeous blonde little girl was in front of us at the registration desk. She asked me how old my daughter was and other questions about her. I thought it was so wonderful that someone else knew what I was going through.Then she asked me her name.When I said “Ella,” her face lit up.

“My daughter’s name is Ella, too! Did you find out [about the cleft] through ultrasound?”

“No,” I told her,“she was my little surprise.”

She asked if I knew what the name Ella meant. I had no clue

— I just liked the name. She told me Ella means “whole and complete,” and I got goose bumps.They had picked out the name Ella for that specific reason.

My daughter’s first surgery is February 7, and my emotions are everywhere. I cry every day.When she was born, I cried because I had this little girl who I didn’t even know if I could feed. Now I cry because I’m going to miss that gummy smile, the spit bubbles coming out of her nose, babbling through her little notch, and the “two for one” slobbery kisses she loves to give.

Thank you so much for the video! I wish I had the opportunity to watch it when I gave birth. It was so nice to hear other parents felt the same way and the information on the tape was so helpful! Again, thank you!

UPDATE: Ella’s procedure was a success. Says her mom,“We’re so happy with the results and how well she came through it all!”

2018-01-06T20:35:39+00:00