As I write this account, it is the day after Thanksgiving, 1996. How far we’ve come. How thankful we are that we found NACD.

On August 23, 1993, our son, Camron, was hit by a car while riding his bicycle. He sustained serious head injuries and was comatose for four months. After 10 weeks at our local hospital, McKay-Dee Hospital Center, Camron was transferred to Primary Children’s Medical Center in Salt Lake City, Utah. This transfer happened only at our insistence. The people at McKay felt we should just send him to a nursing home. Though we never asked, we knew they thought he would never regain consciousness. They were wrong. In our hearts, we knew he would make it and we never asked for a prognosis. But while he was still in intensive care, I knew, too, that it would be up to us, Mom and Dad, to finish the rehabilitation. I remember thinking, “But I don’t know how!”

To this day, three years post injury, Camron continues to progress. His physiatrist is amazed and proud and gives much credit to NACD and the home program they design.

During the summer of 1995, we heard about NACD. Camron’s first evaluation was in August, 1995. In just ten weeks we noticed a big improvement both physically and cognitively. His whole aura changed for the better. I remember how difficult it was for Camron to get on the floor; how it was nearly impossible for him to propel himself forward on his stomach. It took both his dad and myself to work his arms and legs to help him bear weight into them so he could move forward. The difference by ten weeks was astonishing.

I remember hearing or reading about other children who were assigned to walk for 30 minutes per day. It seemed like it would be forever before we could expect that assignment for Camron. But less than a year later, Camron’s program included walking 30 minutes per day.

Camron’s goal was to walk across the stage at high school graduation. Less than ten months after his initial NACD evaluation, with the use of a cane and a fellow graduate nearby, he achieved his goal to a standing ovation.

Camron’s program includes sensory stimulation, balance retraining, and cognitive expansion, along developmental lines. Today his balance is improving and he walks more steadily. He can recall ten random digits and is regaining function and strength in his left arm. To other parents, we say we have never worked so hard on anything nor have we ever been so richly rewarded for our efforts. I shudder to think what our story would be without NACD.

As a child playing doctor, I used to wave my wiggling fingers over the patient saying, “Fix, fix, fix.” Although the NACD program doesn’t work that way, they’ve given us an organized, structured approach that is still nothing short of miraculous.

We are happy to talk with any parent considering NACD for their child. The home office has our phone number.

Reprinted by permission of The NACD Foundation, Volume 10 No. 12, 1996 ©NACD

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In my travels and encounters with parents and professionals, I have had the opportunity to observe influences and attitudes that have either helped or impaired the development of our children, influences that either saved or condemned children.

If I were to identify those things in my education and development which were the most significant and positive aspects, they would not be my various opportunities to gain specific information and expertise. It would be those opportunities that gave me the chance to observe and/or take part in the process of creating theories and techniques for a problem that previously had no hope or procedure.

There are very few absolutes, but there are many realities. A severely hurt child or a comatose child may remain in his isolated state, or he may die. These are realities. All comatose children do not die because of their injuries, nor do they all recover function. Their future is not an absolute. If we do little, they have little chance; if we do a lot, they have a better chance. This is a reality.

Parents say, “Let’s try.” The professionals unfortunately often ask, “Where is the research?” The implied meaning of this question is: if everyone is not doing it, if my professors at school did not tell me to do it, it must be wrong. Doing what the professors say is safe, eliminates responsibility, stifles development, and deprives many children of a chance.

Where there is life, there is hope. Our data is living data our children! Recall the cliché, “The operation was a success, but the patient died!” This idea unfortunately speaks for the state of affairs in the world of medicine and education. “We followed the established procedures and we did our job. It’s not our fault Johnny can’t read, Billy can’t walk, or Tommy died.”

At NACD, if Johnny still can’t read, if Billy still can’t walk, and if Tommy still died, we failed. No, we can’t help them all but our job is to try, and trying does not mean we complacently follow the book. The book has never been, and never will be, enough. It is always too old and Johnny rarely completely fits the description. At NACD our perception of our role is to accumulate, extrapolate, expand, and create knowledge. Johnny’s problem is not going to go away unless we find a way to make it go away.

The development of The National Association for Child Development has been marked by the open and positive attitudes of our members and staff. We welcome those who have the strength to accept the responsibility and to work at opening previously closed doors for our children.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)

Reprinted by permission of The NACD Foundation, Volume 9 No. 1, 1990 ©NACD

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Might it be possible to arouse a person from deep coma? The Medical World has historically answered with a loud “NO” to that question. During a lecture on Neurological Disorders, a student nurse asked me a question which sparked a small ray of hope in my mind. Perhaps it might be possible to bring a person out of a deep coma. She asked “If a patient is asleep during patterning, is it helping him during that time?” My answer was that since the proprioceptive and other sensory messages which patterning was sending to the brain were going into the brain stem and other areas of the brain below the cortex (the thinking portion of the brain), the brain did not have to be awake to benefit from the stimulation.

During the remainder of the class this idea so excited me that I ignored the rest of my lecture and began to talk about consciousness and unconsciousness. It had occurred to me that physicians tended to be vague about unconsciousness and coma. I had seen medical charts of comatose patients where the doctor’s progress notes bore the disturbing evidence of lack of practical knowledge as to the nature of brain physiology and brain dysfunction following profound brain injury. I have seen the following progress note in the chart of a comatose patient: “Today the patient’s eyes opened for the first time; perhaps he is “semiconscious?” When I read that note proposing that the patient might be half-conscious l wanted to ask the doctor who wrote the note, “Which half was conscious?”

I became convinced that, during the coma, the patient’s brain was receiving little or no information or stimulation through the only pathways to the brain the five senses (vision, hearing, touch, taste, and smell). I thought back to the many comatose patients I had seen up to that point in my medical career. I became a physician in 1946 and this lecture took place in the late 1950’s. In the ten years or so that I was stationed at Walter Reed Hospital and in my practice as a specialist in the relatively new field of Physical Medicine and Rehabilitation, I had many experiences with and concerning the comatose patient. At that time I was Medical Director of The Rehabilitation Center at Philadelphia, where the lecture was taking place, and Assistant Chief of the Physical Medicine Department of the Regional Office of the Veterans Administration in Philadelphia. I was Chief of Rehabilitation at two hospitals and Founder and Medical Director of United Cerebral Palsy of Delaware County, Pennsylvania.

I thought of the care being provided to the comatose patients we had seen and asked myself “How much was being done to stimulate the injured brain of each of the unconscious patients.” The answer was the same in every case Not Enough!

As you enter a hospital you might see near the front entrance a poster showing a pretty nurse with her fingers in front of her lips and the words ” . . . Quiet, hospital” imploring us to be quiet while in the hospital with patients. Now if you’ve ever been a patient in the hospital yourself, you know that in general hospitals are not very quiet places. Except sometimes during the night they do make an attempt to keep the hospital relatively quiet. After the comatose patient has been discharged from the intensive care unit and put in another part of the hospital, it’s been my experience that he is frequently placed in a relatively quiet part of the hospital. Not because the hospital administration is afraid other patients might bother the coma patients, but because they think the coma patient might start to rouse up and make some noises that would bother the rest of the patients. It is interesting to note how we would react to that situation, and how the world in general reacts to that situation. If a patient in coma started to make sounds of any sort, we would be excited and encouraged and want to do all we could to get more sounds from the patient. On the other hand the world tends to take the opposite attitude and become concerned about the noise from the comatose patient and, in order to quiet him, might even give him sedatives.

As you enter the room of the comatose patient you might notice that the patient is probably in a position known as “de-cerebrate” rigidity. That is to say, his arms are bent at the elbow and his hands and fists are clenched against his chest. His legs are rigid and tight and sometimes scissoring because of spasticity, and the patient, being in a coma, is unable to move from this position. Since he is unable to move, should his eyes open, what might he be able to see? Well if he is on his back, the only thing he could see would be the ceiling in his room. I’ve seen ceilings in many hospitals all over the world, and I know that after you look at one for about five minutes it’s not very stimulating or interesting. Some coma patients, in order to prevent bedsores, are placed in “strykker frames” and part of the time they are turned from their back to a face down position. In that position all the comatose patient might be able to see, should his eyes open, would be the floor. In general, I’ve found hospital floors to be even less interesting or stimulating than hospital ceilings. In fact, the only time a hospital floor might be stimulating or interesting would be if there was something moving down there. Unfortunately, that’s generally not the case.

A comatose patient receives relatively little stimulation in his hospital environment, but we must not assume that they receive no stimulation. Indeed, most comatose patients must receive extraordinary care in the form of respirators, monitors, intravenous feedings, etc. And so it seems that, with the comatose patient, doctors tend to stick a tube into the patient every place that one could put a tube in an unconscious patient. That is to say, in addition to the intravenous feeding tubes, the comatose patient frequently has a catheter passing through his nose down into his stomach for feeding purposes, and if that becomes too difficult a way for feeding a patient, they remove it and put a tube directly through the abdomen into the stomach, known as a gastrostomy tube. In addition, the patient in coma frequently has a urinary tube to drain his urine. So the simple care of all of the patient’s needs in the hospital, in terms of tending to his tubes, does provide some stimulation to the patient’s body and, therefore, to his brain. In addition to caring for his tubes and feeding, the patient is frequently turned and bathed during the course of his hospital day. Physical therapy, if provided, tends to be very minimal and usually consists only of moving the patient’s joints through their range of motion, a treatment meant to prevent tightness in the joints. However, in many instances because of the tremendous spasticity and rigidity produced by the injured brain, such physical therapy is relatively useless in preventing the joints from becoming tight. In my experience, the stimulation derived from such care is not enough to bring a comatose patient out of deep coma. Indeed, it occurred to me during this lecture that maybe we should be taking more steps in our efforts to arouse the comatose patient. In fact, the possibility occurred to me of using a patterning at some stage with the comatose patient a thought which up to this point has not occurred to any of us who had developed the idea of patterning as a treatment of the brain injured.

It was not many months after that lecture that the opportunity presented itself to me. The first patient to my knowledge to ever receive an organized program of stimulation of this type was a child that I saw in a hospital in Chester, Pennsylvania where I was Chief of Rehabilitation. This child had been struck by a truck nine weeks prior to this time. He was still in a coma and had not, in the entire nine weeks, made a sound or moved his body. Indeed, it was the opinion of the neurosurgeon that the child was “lucky” to still be alive. It’s interesting now as I think back on that boy, that my world of rehabilitation, and the medical world in general, held such little hope of any possible recovery for such patients that the patient in coma was frequently referred to by physicians as a “vegetable.” That is to say, an individual who wasn’t living and acting in his environment but instead was only existing in a vegetable-like state. As you might imagine, I abhorred the term “vegetable” being applied to a brain injured person. It was later that I realized that in some of the other English speaking countries physicians have a term that is even worse than “vegetable” that they use to describe the unconscious patient. In England such patients are frequently referred to as “cabbages.”

Well, this little boy hit by a truck was certainly not a cabbage. He was in a deep coma, so I was called upon to see this child on consultation. I can recall the reaction of the pediatric nurse, who assisted me during my examination of that child, when I attempted to use various forms of stimulation to see if I could produce any reaction in this unconscious boy. The usual methods of stimulation of a comatose patient simply did not produce any response in that child. Hard pressure above the eyebrow at the orbit of the eye, which occasionally brings a response from a person in late coma, brought absolutely no response from this child. Other pressures with my hand and thumb, and the usual stimulation of the foot with a testing needle, likewise brought no response. As I tried these various means of arousing the child I could see the nurse becoming more and more upset at me, perhaps feeling that I was picking on this helpless, nearly naked child who lay before me in a state of deep coma. Noticing her anxiety, I sent her out of the room in order to bring me some ice. However she was even more horrified when I put the ice on the bare abdomen of this child. She gave a gasp of surprise and so did the child! Not only did the child give forth a sound, but he gave forth his first movement in the nine week period since he had been hit by a truck. When this happened the pediatric nurse suddenly realized the purpose of all of the strange things I had been doing to this helpless child. When I instituted a program to stimulate this child, this nurse became one of the best nurses in pediatrics with following through on the program. When she realized the purpose of what I was trying to do, she was indeed very helpful and cooperative.

I began a program for this child that attempted to stimulate him through his five senses, stimulating the unconscious brain with the hope of raising the brain’s level of consciousness. So instead of following the advice of the hospital poster to be quiet, I had the family bring in a transistor radio with an earplug. My order was to stimulate that child’s brain by playing that radio « hour out of every two hours, around the clock. In addition to the stimulation of the radio, I had my physical therapist, nurses, and staff members talk to this unconscious child every chance they had even though he was unable to respond.

We also began to stimulate the child’s brain through the pathway of vision. We used flashlights, pictures, toys, and other objects to do this periodically throughout the day. We had the family bring in the blinking type of Christmas tree lights, which we strung around the curtain holders of the bed to give the child’s eyes something to see.

We stimulated his brain through the sense of touch in virtually every way you might think of, plus some ways you wouldn’t think of. For example, we tickled him, rubbed and massaged him, we used heat and cold on his body, we pinched him and slapped him, pouring into his subconscious brain stimulation through his sense of touch.
His senses of taste and smell were stimulated through various odors placed under his nose and tastes placed on his tongue. As we did this day after day, we were delighted to see more and more response from this child.
At first he seemed annoyed and on many occasions seemed to resist our efforts to stimulate him. But eventually, with his eyes opened, we became aware that he was following us and objects with his eyes. Soon he was moving his arms and legs and reaching for objects! Before long, we were able to remove his nasal tube for feeding and began feeding him by mouth. In the course of time, we were able to get him moving and the child gained full consciousness. When he finally left the hospital some months later, the child was able to walk and talk thanks to a very intensive program of rehabilitation. His walking and talking were not completely normal, his balance was not as good as it might be, and he would occasionally fall. His voice was effective in that he could speak in short sentences, but sometimes his sentences were not complete. There was an interesting nasality in his voice. Over the years, we’ve come to know these types of residuals to be rather common in brain injured patients, particularly when the brain stem has been injured. We have since developed some techniques to minimize these complications of the brain stem injury.

This child was my first patient who was subject to a program of intensive sensory stimulation while in coma and who, to my amazement and delight, responded and became conscious. Since that time, I have had the good fortune to have been able to rehabilitate hundreds of comatose patients throughout the world in our various clinics. To my knowledge, I believe I have rehabilitated more comatose patients than anyone in the world.

Coma patients tend to respond to programs of stimulation differently. Indeed, not every patient who is in a coma responds to a program of stimulation to a point of recovery. There are various degrees of improvement in coma patients: from those patients whose recovery is complete, to the point that they can in fact, return to school, find work, marry and have families, and live what I would consider a normal life, to those patients who respond very little and never totally come out of their comatose state to the point of being able to communicate.

Since that first comatose patient, over twenty years ago, we have been able to refine our treatment techniques to a great degree. We’ve learned a great deal about the coma patient and his response to his environment. We are now aware of the fact that, in many instances, the coma patient has not had too little stimulation reaching his brain through one or another of his five senses. We now believe, that in many instances (in some senses at least), the brain may be receiving from one or more of the senses, too much stimulation while the patient is in a state of coma, and the brain is unable to integrate this information being received through the senses with all of the other information coming into the brain. Therefore, unless proper measures are taken in the treatment of such a patient, his progress may be delayed until the right techniques are used to overcome this aspect of the problem. As you proceed with the stimulation program on a comatose patient and when the program is starting to become effective, you frequently become aware of the fact that the patient is able to take in a great deal of information, and is becoming far more alert and aware of what’s happening to himself and around him. Yet, on the other hand, he may be having great difficulty trying to express what he wants to say, and communicate. With persistence of a good program of neurological organization, combined with stimulation, speech can in fact, return. Mobility tends to be slow and difficult. But in many instances, mobility does return to the point of the patient being able to walk, and even in some instances, to run.

There are many causes of coma. The most frequently seen is coma due to trauma or injury to the brain as the result of an automobile accident, a fall, or a blow on the head. In addition to trauma, we see brain injury of a severe nature such as occurs with near-drowning. In this instance, the brain is injured as the result of lack of sufficient oxygen. We have seen and treated many near drowning coma patients. There are other causes of coma, including coma which results from severe, uncontrolled diabetes. Other causes may include hepatic (or liver) coma, as well as uremic (or kidney) coma. Coma may occur as a result of an infection of the brain such as encephalitis, or such problems as brain tumors. Coma may result from increased pressure on the brain, as is seen with severe hydrocephalus. Fortunately, for patients with hydrocephalus, surgical procedures to relieve the pressure through shunting operations are often helpful.

Unfortunately, the medical world in general is still unaware of the fact that, in many instances, coma can be successfully treated through a program of stimulation. So there are still patients throughout the world suffering from coma, who eventually die without help. It is sad to think that many such patients die without anyone ever trying to stimulate the brain. On the other hand, it is encouraging to realize that we are seeing more and more patients in coma whom we have been able to help.

Our program at NACD incorporates the advances that we’ve been able to develop in the last twenty years of treating comatose patients. We look forward in the future, through research, to developing additional techniques that may be of value in dealing with the difficult and challenging problem of coma.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)

Reprinted by permission of The NACD Foundation, Volume 3 No. 1, 1982 ©NACD

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