WHAT an anxious wait! Our first child was about to be born. I was in the hospital that day, not as I usually am with scalpel in hand, but equipped with a camera to document this great event in our lives. My heart beat faster as I saw the tiny head slowly begin to emerge. My son and heir! And then—what a disappointment! He was obviously handicapped—a harelip and, as I found out later, a complete cleft palate! I went numb all over and began to tremble with despondency. My wife was given a sedative immediately so she would not suffer the same shock. Tears filled my eyes as I turned to leave the room.
Later, in the hospital’s nursery, I wept from sheer disillusionment. Why us? Our first child! Why had this happened to us? How would my dear wife, Isaura, react when she learned of it? Later, as I regained my composure, I began to reason more clearly.
I remembered that the Bible taught that we are all imperfect, subject to weaknesses, illnesses and defects. Our child was born handicapped because we, his parents, are imperfect. Some irregularity in our genetic makeup or in the environment had caused this defect. For our own part, we had inherited imperfection from our forefathers and originally from our first parents, Adam and Eve. How relieved I was that I had not blamed God for what to me was an enormous disappointment!—Psalm 51:5; Romans 5:12.
It was only natural for me, a surgeon, to think, too, of what my medical studies indicated as to the cause of this handicap. No one factor can be isolated as the cause. Stress, medication such as antibiotics or contraceptives, pollution and heredity are considered to be possible factors.
How to Meet the Challenge?
Whatever the cause in our particular case, the main question was: How could we meet the challenge? I remembered a fellow medical student who had also been born with cleft palate and lip and later had been operated on. But what a time he had had as a child to make himself understood! And I thought especially of the psychological problems he had to face because of unkind words, even mimicry, on the part of others. Could we prepare our son to stand up to such experiences? Even more pressing at the moment—how would I tell my wife so as to minimize the blow to her? I had tried once, only to have to leave the room before bursting into tears.
Impatient to see her child, Isaura asked me on the second day: “What’s wrong with our baby? I want to see him.” Shedding my professional bedside manner, I tearfully told her. “Is that all?” was her amazing answer. “The main thing is he’s alive. I would really be sad if he had been stillborn, but he’s our child and he is alive! I want to care for him.”
I was completely unprepared for the serenity with which she reacted and felt ashamed of my own previous reactions, even more so as I saw with what tenderness she took him into her arms. When I pressed her later on the matter, she answered: “Of course I knew that he had some problem. Remember, I had only a spinal anesthetic so I was watching by the reflection on the lamp. I saw he had a defect but didn’t know how serious it was. My biggest fear was that he might be stillborn. So how happy I was to hear his first cry!” All my stewing had been unnecessary!
We began to appreciate the problems we would face in raising our child. Like every baby with a cleft palate, it was impossible for him to breast-feed or even to suck. We first had to draw the milk from Isaura and then carefully feed it to him with a tiny spoon.
I had attended only one birth where the child was born with cleft palate and, aside from that, had had no experience with the problem. So we began reading books, especially those dealing with the treatment. This research took me to a plastic surgeon who directed me to the State-operated Hospital for the Study and Rehabilitation of Lip-Palate Lesions in Bauru, S.P., Brazil, called affectionately O Centrinho (the Little Center). There we were informed: ‘Yes, we will be glad to handle the case, but only after he is three months old.’ In the meantime we were to do the best we could in feeding him as we had been doing. We drove home with a slight feeling of disappointment, not quite sure whether we were on the right track or not.
Three months dragged by. Finally on the day set we drove early to Bauru. What we learned that day left us amazed but also hopeful. Our son would be operated on that very day, and while we waited we would be informed as to what was involved. We learned that his first lip operation was only the beginning, and that we should be prepared to carry on with his treatment for several years! Besides the plastic surgeon, other specialists would take part in different stages of treatment: a pediatrician, a nose and throat specialist, a specialist in orthodontics and another in speech defects, and finally a psychologist. “He is to be treated by all these people? Is it that serious?” we asked. “Yes, he will probably need help from them all,” was the answer.
The pediatrician would prepare our son for the surgeon who would perform the lip operation and, about 18 months later, would operate to repair his palate, or the roof of his mouth. We learned also that infections are quite common in the throat and the ears of children suffering from cleft palate, requiring the attention of a specialist in these areas. In nearly all cases of cleft palate, too, the teeth of the child grow in twisted or irregular; so enters the specialist in orthodontics to care not only for the baby teeth but also for the permanent ones. Persons with harelip or cleft palate also have difficulty in forming words clearly so they require special training to overcome speech defects. Finally, the psychologist attends both the patient and his parents to prepare them for problems that arise as the child comes in contact with others in school and on playgrounds.
After nearly eight hours of talks and interviews during that first day at the Centrinho, we began to appreciate the problems ahead of us. Slide showings helped to impress on our minds the need for us to be patient, for much would depend on our attitude and efforts during the treatment. I learned that my initial negative reaction was quite common among parents in our situation. In fact, my reaction was mild compared with that of some. Not infrequent are feelings of actual rejection of the child by parents, with expressions such as, ‘I detest having a child like this!’ or, ‘He was born this way to punish us!’ Some parents just want to leave the child at the hospital and forget about him. In contrast with such negative feelings were those of real affection for the child and of genuine desire to do whatever they could for his welfare.
Eating Was a Problem
The operation had improved his looks immensely and with time the scars became almost invisible. But other problems remained. With no roof in his mouth, swallowing liquids was a real chore. It was impossible for him to suckle, and if we gave him too much food, it would just run out of his nose. Constant care was needed so he would not choke. Weekly control visits to the Centrinho were a must. However, as time went on, we became more adept at feeding him and caring for him. We were happy to confirm what we had been told from the beginning: His defect would in no way affect his mental processes. What a joy to see him develop into an energetic, active child, normal in every other respect!
We were very grateful for the counsel received at the Centrinho, as it helped us to cope with the reaction of other persons who for the first time saw a child with harelip. I recall one occasion when we attended a religious convention soon after Adner was born. A friend of ours remarked: “Poor little thing! He’s going to die!” Happily, we were able to explain just what was involved. We made no effort to hide his defect and we tried not to pamper him. Rather, we tried to rear him as we would any other child.
During the months that followed we had to make a decision. We felt that it would be good for us to have another child. To raise an only child with the special treatment that he needed could result in his being spoiled. But should we risk having a second handicapped child? We decided to run that risk, so by the time Adner was being readied for his palate operation, Isaura was well along in her second pregnancy.
The operation on the palate was more serious than the one on the lip and took much longer. For us it was more stressful since we could not see him until he was released from the hospital. But how happy we were when we knew that it, too, had been successful! Now, with healed lips and a roof in his mouth, he was finally able to eat without any difficulty. Another big hurdle was passed. The next obstacle was to teach our son to speak properly.
Learning to Speak Clearly
The lip and palate operations naturally affected his ability in this regard. To understand his problem, consider for a moment just what is involved in speaking. Observe your mouth as you pronounce the vowels (a, e, i, o, u). You will notice that you can do so with only limited movement of your mouth and lips. Vowel formation depends mainly on the air from your throat passing unrestricted through your mouth. But now try forming the consonants (b, c, d, f, etc.). Notice that as you form these consonants, it requires a greater movement of the lips, tongue or throat. Anything that hinders this movement makes it more difficult to form sounds. So you can see the problem faced by a child who has had an operation on his lips and the roof of his mouth.
You may have noticed that anyone who has a cleft palate speaks with a heavy nasal sound. The reason is that, with no roof in the mouth, the air passing over the vocal cords in the back of the throat is forced out in a manner that gives a definite nasal sound. The purpose of the operation on the palate was to close the cleft in the roof of his mouth—a very delicate operation. In our son’s case, this successful operation enabled him to begin to speak with little nasality, but he still needed months of special training at the Centrinho so as to speak clearly. At times it seemed that he realized when he did not speak correctly and he would correct himself. We were very happy with his progress. At five years of age he was able to speak clearly, and his visits to the hospital were suspended for about a year.
The next stage of his treatment will be to correct his permanent teeth when they begin to appear. As is generally true of children suffering from harelip and cleft palate, both the baby teeth and the permanent ones tend to come through irregular in number, shape and size, and some out of place. Some just do not come through. Treatment involves braces to straighten crooked teeth and, in many cases, prostheses to substitute for teeth that are missing. We do not anticipate any problem when Adner begins this treatment.
Has It Been Worth the Trouble?
This is a question that some people have asked. It is true we have had many anxious moments during these five years. The weekly visits to the Centrinho were a trial, especially for Isaura. There have also been many sleepless nights when our son was recovering from surgery. However, as we watched his lips and mouth heal rapidly, as we heard him gradually improve in speech, we could only repeat the thought of the Bible psalmist, ‘In a fear-inspiring way we are wonderfully made.’ (Psalm 139:14) Moreover, as we listen to him use his copy of My Book of Bible Stories to teach his younger brother (who happily was born without any problems), there is no doubt as to whether we did the right thing.
We are grateful to the clinical group at the Centrinho for what they have done for our son, and for what they continue to do on behalf of persons afflicted with cleft palate and harelips. Above all, we are grateful to the great Creator of our wonderful bodies—who has given us the marvelous hope of living in a New Order free of sickness and physical defects. Along with other texts, the expressions used in the following passage especially fill us with hope: “At that time the eyes of the blind ones will be opened, and the very ears of the deaf ones will be unstopped. At that time the lame one will climb up just as a stag does, and the tongue of the speechless one will cry out in gladness.” (Isaiah 35:3-6)—Contributed.
[Blurb on page 13]
“What’s wrong with our baby? I want to see him”