At the time, most children only had repair of the lip at an early age. The cleft palate repairs usually came several years later. Dr. Magee thought earlier repairs of both would prove beneficial and we agreed to be one of his first patients to have the corrections made simultaneously.
The
following two months were filled with anxiety and questions. Literature
sent to us explained clefts and the normal treatments, but was very outdated.
Many children had clefts repaired at two and three years old. The psychological
impact on the children and their families was devastating. We experienced
some of the negative reactions in the hospital when Casey was born. The
nursing staff blocked my view of Casey immediately after he was born because
they were unaware that we knew of the cleft. The hospital photographer did
not take his newborn picture. They thought we wouldn't want the pictures.
Despite this, I thought Casey was a beautiful baby. I feel fortunate now
that I knew of the cleft in advance and had time to mentally and emotionally
prepare.Due to an Operation Smile mission and Casey's late arrival, Casey was almost three weeks old before his first surgery. The results were miraculous, but the first year was full of difficulties. Casey lacked the ability to suck and feeding was difficult. We used preemie nipples and squeezable bottles to feed him. Almost as much milk came out of his nose as he digested, and he was always below weight. We noticed that Casey did not respond to noise at about four months. A hearing test determined he was hearing, but fluid was present in his ears muffling the sounds. Several months later, Casey's eardrum ruptured after an ear infection. At ten months, during a surgery to revise his palate, the first set of tubes were put in place. Almost immediately our relatively quiet baby was babbling and saying his first words.
The next couple of years were filled with repeated visits to the doctors of the Craniofacial Center. We regularly saw a speech therapist and the dentist. Poor enamel and slow development of his baby teeth compounded Casey's dental development. His speech was almost incomprehensible due to a short palate and we worked twice a week with a private speech therapist until a procedure was done when Casey was four to lengthen his palate. This did wonders for the quality of his speech. Besides the original repair, this surgery was the most difficult of the nine procedures he's had.
As Casey
grew older, his recovery seemed to take longer and his expressions of fear
were difficult for me to handle. From the beginning we were straightforward
and honest with Casey about the procedures he would face to correct the
cleft. He is looking forward to having a straight nose and better teeth
and is willing to go along with his treatment because of the final outcome.
He has developed a great self-esteem and rarely lets his appearance get
him down. He deals with his doctors with a wonderful sense of humor.Currently he is undergoing jaw expansion through orthodontics. Just recently, Casey has had a bone graft to create a gum line and further revision of his lip, nose and palate. He came through this procedure remarkably well. It was a lot easier on him than I had imagined it would be. We now look forward to the day his smile is complete.