You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: My Baby Won't Eat (Oral Defensiveness)
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***** My Baby Won't Eat! *****
by Joanne Green
We waited for Jessica a long time -- nine months, to be exact. And though nine months is a reasonable time to wait for most babies, Jessica was not gestating through our wait. She was growing older. We were adopting her, just as we had adopted our two sons before her. Like our sons, Jessica was born in Korea and was cleft-affected.
Finally, we found ourselves at the airport, noses plastered to the glass wall, hoping for a glimpse of the plane that carried our child to her delivery. Jessica and her escort were the very last to get off the plane. I ran to her and grabbed her out of the escort's arms, "Are you the mother? Are you Mrs. Green?" Yes, yes, yes. I am the mother, and my daughter is home at last! No more delays, no more snafus, no more altered plans - she was home.
My husband (who generally has more presence of mind than I do at these times) pulled out our ID and signed the necessary forms.
The escort gave me her travel report: "She slept almost the whole way. She's not real happy right now. I'm worried, though, because she hasn't taken a bottle or eaten anything on the entire trip. "Oh, that won't be a problem," I responded, "I know how to feed a cleft child. Both of my sons were also born with clefts." Oh, how I wish it had been that simple.
While still at the airport I tried to give Jessica a bottle of pedialyte & water (these babies can really dehydrate on their long flight). She didn't want it. I was not alarmed. I figured she would want it sooner or later. I would just keep offering it to her. I opened a container of cereal puffs. At 20 months, I had assumed that the tasty finger foods would be right down her alley. She stopped crying for a moment and stared at the cereal in my hand. Then, with a perfect pincer grasp, she picked up a piece of cereal, held it out, and dropped it to the floor. She still had not taken liquid nor solid when we left for home. I was concerned about the 2-hr ride, but she refused our every offer. Once home, I reasoned, she can begin to relax, and then maybe she will eat. Not so. She took a few drops of liquid from a Mead Johnson bottle and then refused any further attempts to entice her to eat. We continued to offer all night long. The next day I tried apple sauce. Once I finally got a spoonful into her mouth, amidst a flurry of protests, she gagged and threw up everything we had struggled to get into her tummy. This was shaping up to be a real challenge. More than that, it could become life threatening. Not only did she not WANT to eat, it appeared that this baby didn't know HOW to eat. By the end of her first full day at home, we felt that our greatest priority was to get some nutrition - and fluids into her body. We were still uncertain as to why she would not eat. We thought at the time that it might have been a control issue, or a reaction to her traumatic move to a new culture. Regardless, the bottom line was that this girl had to eat.
At 20 months old, she weighed only 14 pounds. Her skin was dry and hung on her frame in wrinkles. I feared for her safety if we could not get food into her and soon. Our doctor prescribed a high-nutrition formula and lots of fluids. Good plan? But how do we get it into her? We began to do what I called "scream & squirt". Thank God for the Mead Johnson squeezable bottles. Were it not for them, we may never have found a way to feed her. As it was, she would scream her protests at being fed, and I would squirt a small amount of formula into her mouth, against the inside of her cheek, and she would swallow it. Feeding time was traumatic - for all of us! She hated being fed, and we hated what we had to do to feed her.
Then one day, after nearly three weeks of "scream & squirt", she just suddenly began to accept the bottle. I heaved a great sigh of relief. We weren't going to lose her after all. At 21 months of age, I successfully got her onto the bottle. It was the same age that I had weaned my sons. There were other signs of oral problems. For instance, she was under two years of age, and yet NOTHING went into her mouth - not toys - nothing. And she was not only non-verbal still, she was entirely non-VOCAL. She made no voice sounds whatsoever. When she cried, it was a grating, rasping noise that she pulled from her diaphragm. She didn't coo, she didn't babble, and she sure didn't talk.
I tried to explain Jessica's problem to the many different doctors and medical persons with whom we had contact. "Jessica will not eat." I would say. They interpreted me to mean, "Jessica is a picky eater". But that wasn't it. The best way to describe my tiny daughter is to say that she was an anorexic toddler. Every morning I measured out the amount of formula she HAD to have to maintain her current level of weight and health (yes, she was gaining weight - albeit very slowly - and she had become tiny but healthy). I knew that we HAD to give her at least the measured amount, and try to give her more.
The formula supplement that gave my daughter the chance she needed to maintain her health was very expensive. We tried to find Funding sources to cover the cost - after all, we were fully insured, and we qualified for CCS. But insurance did not cover nutritional supplements. CCS called it a "behavioral problem" rather than a physical one (I don't know, I sort of thought that starvation was a physical thing!) and the Regional Center, who had a feeding program, was back-logged in their intake department. In their words, they "hoped the wait will not be inconvenient." I felt like I had called 911 and been put on hold!
I began to think of Jessica's feeding problem as a kind of phobia. She seemed convinced that if she put anything in her mouth, it would hurt her. I had studied phobias in college. I had even helped to treat some phobias in my professional career. A phobia is an irrational fear of something, resulting in dysfunction. When a person is phobic of something, they will do anything to avoid the object of their fear. As long as they successfully avoid it, they reason to themselves that they did not get hurt because they avoided the "thing". Therefore, the avoidance behaviors are reinforced and strengthened, until the avoidance behavior renders the person completely dysfunctional.
There are two treatments of choice for phobia. One is Flooding. The other is Systematic Desensitization. In Flooding, you basically "force" the object of fear on the person until they realize that it really is not going to hurt them after all. Our "scream & squirt" method was a type of Flooding. However, when it comes to being afraid of things in the mouth, it is quite possible that Flooding will in fact reinforce the idea that things in the mouth can hurt them because it will cause gagging and possible choking - their worst fears.
Systematic Desensitization is a longer, slower process. In Systematic Desensitization a person is slowly offered more and more of the offensive stimulus, always allowed to retreat to a "safer" stage, while at the same time pairing that stimulus with relaxation. Jessica could not tell me in words if a stimulus was more than she could handle. I had to be sensitive to her reactions. We always offered the "next step" in the eating process to her, but we forced nothing as long as we knew she was taking in the nutrients she needed to sustain life.
About three months after she arrived home, she "mouthed" her first object. She actually put something up to her mouth! It was a balloon (I PRAYED that it wouldn't pop!) A few weeks after that, she allowed us to approach her mouth with a glass or cup and bring the liquid up to her lip (and down her front - sigh). Nine months after she arrived she allowed us to put a spoon into her mouth. (A few days later we heard from the Regional Center - they were ready to begin our intake. I told them they were too late, and let them imagine why.)
We had made great progress in nine months, and yet Jessica still associated eating with tremendous stress. She never once held her bottle. When I gave her bottle to her, she would keep both of her arms outstretched, hands clenched into tight fists, knuckles white. She also would not bite or chew. She started out taking only liquids from a spoon, but soon would take anything that was blended into a watery mush. The blended foods gradually got thicker, but she still would not chew. Over the next year we took the bottle away (she never once cried for it - it had always been nothing more to her than a necessary evil.) and we experimented with various tastes and textures.
At one point she began to eat soft foods that needed a minimum of chewing, but she lost weight, so we returned to blending everything. Finally, three days before her palate repair, and 22 months after she arrived in the US, my daughter climbed into a chair, up to a plate of food, picked up a spoon and fed herself. (Timing could not have been worse, but she was REALLY eating!) After surgery and aftercare, and a few weeks of coaxing, she bit and chewed again. Our struggle lasted two years. Her feeding problems are at last behind her. This little piglet can eat all day every day. And yet, my nearly four-year-old girl wears 24-month clothes. She weighs in at a whopping 23 pounds - children half her age dwarf her. Her speech is profoundly delayed - but then, if you aren't developing your oral muscles at all, you will not learn to speak.
We are hopeful that we will see more normative speech soon. Meanwhile, all other areas of her development seem to be on target. She ACTS like a three-year-old, LOOKS like a two- year-old, and SOUNDS like a one-year-old. Jessica's problem has a name. It is called "Oral Defensiveness" - more a descriptive phrase than a diagnosis. As far as I can tell, there is no definitive treatment for this condition. It is iotragenic in nature. That means it is a condition that is caused by a treatment.
In her case, Jessica was gavage fed (fed through a tube that led down her throat and into her stomach) for a long period of time. Other children who become orally defensive may have been intubated a number of times, or have had other noxious experiences involving things that are done with their mouths. Nothing in my experience as a mother has challenged me more completely than Jessica's oral defensiveness. One reason for that was that I thought I was the only person in the world who could not feed my child. And yet, while it is a rare condition, there are many others who struggle with it. Most kids aren't quite as defensive as Jessica was, and I have not yet learned of an orally defensive child who did not eventually learn to eat. Is it, in fact, a phobia of eating? I don't know. There would have to be empirical studies done to determine that. But CALLING it a phobia helped me tremendously. Once it had a name, I could deal with it. And once we were able to deal with it, we began to find our way through it. Once, I could not feed my baby. Now I can't seem to keep her filled. As long as there are bananas, hot dogs and bread in this world, Jessica is one happy girl!