ACPA Family Services

Cleft-Craniofacial Community Stories

Graci Brown

My name is Graci and my mommy wants to tell you all about me. She is the best mom in the world, and without my family I wouldn’t be as strong and determined as I am today. My family thinks I am a “little princess” and an angel sent from heaven. Come to think of it I am pretty special ,and no one will ever tell me any different!

My husband and I were so excited to find out that we were expecting our first child. My pregnancy went great. I felt so good and I loved food and sleep and I got plenty of both. The day of my ultrasound it was my husband, my mother-n-law and myself. We were so anxious to find out the sex of the baby. We found out we were having a girl.

We were all convinced it was a boy, but knowing it was a little girl growing inside of me made us all ecstatic. I will never forget my husband asking the ultrasound tech, “Is everything okay?” and she said, “I’ll let the doctor decide.” I was so nervous and my heart immediately fell to the floor. They proceeded to tell us that she would be born with a cleft lip and surgery could fix it. Well, that didn’t make things any better. We were devastated and all we could do was cry. I couldn’t imagine that this would happen to me. I couldn’t imagine that this precious baby inside me that God was creating was going to be born with a birth defect. Immediately, I got on the computer and researched and learned everything there was to know about cleft lip. I learned more than I ever thought I would about clefts, for example I learned that a majority of children born with clefts also have cleft palates as well. I then educated my husband family, friends, and myself.

It was hard going through my pregnancy knowing that something was going to be wrong with my precious little girl. But, we were thankful that the ultrasound was able to pick it up, so we were prepared. We then found out that it was a common birth defect and had met several people of parents with cleft lips. Knowing that there were other people out there in our shoes gave us hope. Being a parent is hard enough; but being a parent of a child with birth defects is even harder.

The day Graci was born was the happiest day of my life. She came into this world just as I had imagined—beautiful! She was born with a unilateral cleft lip and palate. She also was born with an ear deformity that was not seen on the ultrasound. There were other issues and doctors had diagnosed her with hemifacial microsomnia. She had an underdeveloped side of her face. Along with her cleft lip, palate and ear, she also had a coloboma (cleft in the eye) and was missing half of her jawbone. All of this was hard for us, but we were able to look past all the things that were wrong, and she made us fall in love with her.

We were introduced to a wonderful craniofacial team early in my pregnancy that provided great help and support for my family. Being a parent of a child with birth defects brought many trials and frustrations, and without the support of a great team of specialist, as well as all the many web sites it would have been extremely difficult. They were always there to answer all questions and reassured us that Graci’s issues were all treatable. We then realized we had so much to be thankful for and felt blessed that we had a healthy baby.

The day came and Graci had her first surgery to repair her cleft lip at 4 months of age. It was hard knowing that your little girl was about to have surgery, but it was even harder knowing that she wouldn’t have that same wide smile that we were all so use to. The surgery went great, and she recovered and healed perfectly. We were just amazed and pleased with her surgery, and thankful for modern technology. She had the cutest little nose and lips I had ever seen. Feeding was also an issue and very difficult at times, but after surgery Graci was even able to form some suction through the Pigeon nipple. (Thank goodness for all the great bottles made just for cleft babies).

Graci had her second surgery repairing her cleft palate at 14 months of age. It was hard for my husband and I because we hated putting her through it, but we know that it was for her own good. The surgery went great and she was back to her normal self-days later. She was then able to eat table foods and her speech began to improve.

Graci has a long road ahead of her. She will experience more in her first five years of life then most people do in a lifetime. She will have to undergo several more surgeries including- nose revision, jaw surgery, bone graft, ear reconstruction, orthodontic treatment and lots of speech therapy. Of course, I worry about her future and when she starts school, but I know that I have to be strong for her. My husband and I plan to educate her as soon as she is able to understand.

We want her to feel comfortable with herself and be able to talk about it with others when they may stare or even ask questions.

Graci is such a sweet and happy child. I live for the mornings to see her smile at me and blow me a kiss when I leave. She is absolutely perfect in our eyes.

Last Updated: Jul 24, 2006