Next we met with the geneticist. He was able to answer a lot of our questions. We learned that clefting occurs in 1 in 700 children born here in the US, the majority of them being male. It is the 4th most common birth defect in the United States, and can be caused by a number of reasons: genetics, family history, certain medications, environmental factors, etc. No one knows the exact cause of facial clefting, and most medical professionals agree that no single factor can be identified as its cause. Neither my husband's, or my family had ever had a history of any type of clefting, so we had no clue why this occurred.
Trevor's first day of life was a difficult one for him as well. His respirations were too rapid, and he was having a very difficult time drinking from the special bottle made for babies with a cleft. It was touch and go. We spent the rest of the day in the nursery, just watching over our little boy. We were only able to hold him once or twice, as any kind of excitement might make his respirations increase again.
The second day of Trevor's life brought new hope! A local cleft support group had come in with a "Newborn survival kit" for cleft affected babies. In this kit, was a ton of information dealing exclusively on clefting. It answered all of our questions and more!
There were also 3 different feeding systems for babies born with a cleft. Since the bottle that the hospital had given us wasn't working for our little guy, I decided to ask the nurse to try out one of the bottles in our "survival kit." The minute Trevor put his mouth on this bottle, he was able to drink from it!
Talk about joy! My husband and I were both on cloud 9! I never in a million years thought I would be so happy that a child could drink out of a bottle, but boy was I ecstatic! Trevor drank well and enough to be able to go home the next day. We were so happy!
The next few weeks were difficult, to say the least. Doctors visits, insurance woes, and everything that goes with it, took over our lives. We found a great team of doctors to care for our son and his "congenital facial anomaly," as they called it.
We planned out the course of action for the next few months and learned what to expect, as far as surgeries and dental care go, for the next 21 years. It was going to be a long haul, but we knew we would get through it.
Trevor would need 3 surgeries in just his first year of life. One to join his lip together, another to give his newly-joined lip shape and definition. The 3rd, and most extensive surgery, would be the palate repair. This would join his palate from one side to the other, using tissue from other areas in his mouth. This is a very important procedure. The soft palate aids in speech by moving up and down, enabling a person to make different sounds. With a cleft in the soft palate, it can't move normally, if at all, therefore, the speech is greatly affected.
The first surgery was scheduled a few days after Trevor's 3rd month of life. By this time, we had gotten used to our precious son's "wide smile." We had found great support both in our town, and on the web, and formed wonderful friendships with those who shared our common bond. Now, it was time for the first step in Trevor's cleft repair.
The morning came as any other. We rose early, dropping our almost-two-year-old at a sitters. We drove to the surgery center, and were all very quiet. "What would this day bring? How will our son look with his new lip? Will he be OK? Will he make it through the surgery?" All sorts of thoughts flowed through my mind. Trevor hadn't eaten since midnight the night before, and was doing surprisingly well for a hungry 3-month-old!
We arrived at the surgery center, and I grew even more nervous. This was the scariest day of my life! The nurse came in and checked Trevor's vitals. All was well. He was a cutie, even with the cleft, everyone said. We sat and waited for a while.
Then, the time came for them to take him away. They took him from my arms, and I bawled. He had fallen asleep by this time, so didn't mind being taken away by someone he didn't know. He did a lot better than his Mommy!