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., 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 2 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!
Then, we waited. And waited. It seemed like an eternity before anyone came in. I watched the clock, and grew more anxious. Finally, an hour and a half later, a nurse came in to tell us they were done. "Trevor did very well. He's in recovery. He'll be out shortly.." he said. A big sigh of relief. At that moment, I wanted to see my son. Had to see him, just to make sure he was OK. But of course, we had to wait. Half an hour went by, and there he was. In an instant, my heart sank! What I saw was not what I expected, nor prepared for. Trevor's face was swollen and bruised. There was blood around the lip and nose, and surgical tape across his newly-joined lip. He had restraints on his arms, and an IV in one hand. He was definitely a sight to see.
We went home later that afternoon, with instructions to remove the tape the following morning. I was so anxious for the morning to come. I couldn't wait to see his new lip! The morning came, and I scooped my little guy up, fed him, and set up everything to take the tape off. When I removed that tape, I was floored! My son was a whole new boy. Words cannot describe what I felt when I saw his new lip for the first time! I cried and smiled at the same time. Tears of joy flowed down my cheeks. The plastic surgeon had done a GREAT job! My little boy no longer had a 'wide smile!"
Here we are, almost a year after my "education" began. In the course of this year, Trevor has had 1 more surgery to correct his lip. In this time, he has gone from that special bottle, to a regular bottle, and now to a sippy cup.
It's OK to be afraid. It doesn't matter what everyone thinks about you or those you love And that it's OK to cry. I have learned that our situation was really not that bad compared to what it could have been. And the most important thing that I have learned in this time is that it's OK to ask for help. I don't have to do everything myself, nor can I. I have learned to seek the support of my family and friends, not only for physical help, but for the strength to get me through one more day. To help me know that it IS going to be OK, and that it's OK , if it's not. I feel truly fortunate over the course of this year, in this long, bitter-sweet journey, that I have been educated in life in something others may never learn, or never know.
Ah, the value of education!
lay in the bed, I turned to look at my husband. I don't know why I did at that moment,
but what I saw then, changed my whole outlook on our new situation. My husband was crying-tears just flowing forth, down his face, one after another. If you know my husband, you know that he is not a man who cries easily, if ever at all. My whole thought process changed at this very instant! I felt in my head that I, alone, had to be strong! I knew, I felt, that I HAD to carry on, be strong, show no fear, no emotion, nothing. Just plug along, and be strong for my husband, and my new born son!
The next few hours, actually, the whole day, flew by. About 3 hours after our baby was born, doctors, specialists, nurses-anyone that had an inkling of expertise in dealing with a cleft, came into our room. We first met with a speech pathologist.
went into labor. It as a very quick process, and with no help from Mommy, our darling son entered the world very early, on a Thursday morning. I looked down at the end of the bed
to see my new born child, and noticed that something was different about his face. I looked over to my OB who had just walked in, and asked, "What's wrong with him?"
"Nothing," she said. "He's perfect and healthy," she added. I knew better, but didn't say anything. I just wanted to hold my new little guy. The nurses scooped him up and cleaned him off, checked his vitals, etc. to see what as going on with him. It took a nurse to tell my husband and I that our son had been born with a cleft lip. I didn't know what to think. I really didn't have a good chance to look at him, or take him in, and only recalled from my elementary school years, a friend who's sister had been born with a cleft lip. All kinds of thoughts flooded my mind, full of fear, worry, concern, and tons of questions, but all I could do at that moment was hope and pray that our son would be OK and, of course, cry.
During the bustle of after-birth care, a few more pediatric nurses came in. They were doing what tests they could in the birthing room. As I
In the Course of a Year
By Melissa Cook
July 2001 It was a little under a year ago, that
I began my "education." This was an education
that I could never have learned in any school.
One that couldn't be studied in any manual or
heard at any lecture in college. My "education"
began without warning, but will continue on with
me as I grow old. It is amazing how one little thing can change your life so drastically in an instant. In the course of a year, I have learned so much, probably something more important than anything in my 27 1/2 years before that.
Let me start with a few facts. Birth defects
affect over 150,000 children in America every
year, according to the March of Dimes. There
are many different types of birth defects that a
child can be born with, some severely, that may
She told us a little bit more about our son. Trevor was not only born with a cleft lip, but also a cleft of his hard and soft palate and gum line too. Shock number three hit us that day. We didn't know what this meant. We had heard of a cleft palate, but didn't know anything about it. "What does this mean? How does it affect our son? What causes
this? Will he be mentally challenged because of it? What else is wrong with
him?" These were all questions that we had in our minds. We didn't know a thing! The pathologist told us that because of this cleft in his palate, he wouldn't able to drink from a regular bottle. He did not have the proper
suction for it. He would have to drink out of a special bottle made just for babies with a cleft.
Next we met with the Geneticist. He was able to answer a lot of our questions. We
This Month's Featured Family!
Unilateral Cleft Lip/Bilateral Cleft Palate
Born August 10, 2000
affect the child for the rest of his or her life. Others, only for a very short time and easily correctable. Their effects on a family and an individual can be devastating,
but at that same time rewarding !
Almost one year ago, my husband and I were expecting our second child, a boy. Everything had gone very well in my pregnancy. I had had several ultrasounds, each one "normal" in every way. The biggest thing we were worried about was the size of my little boy-to-be. His big brother was a whopper at birth( 9 lbs, 11 oz), and the OB/GYN said to expect the about the same. About 3 weeks before my due date, I
He is a "normal," happy child, with a little scar or two. These last 11 months with Trevor have been filled with triumph, fear, joy, tears, heartache, and pain.
Along with my little boy, I have grown and changed into the woman I am today. I'm a little older, a lot wiser, and a better person all around. It may sound strange to some, but I thank God every day that my little boy was born the way he was. I would not be the person I am today without going through all the tribulations I have encountered, and the life lessons I have learned. I've learned during this time that it's OK to not be the strong one
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014