Patterns of Hope : A Controversial Therapy for Brain-Damaged Children

Her screams seemed endless. Through nights when she gasped for breath and came close to death, through days when her infant body convulsed, then lay rigid, she screamed. They were the screams of a child whose injured, swollen brain had left her barely able to breathe, totally unable to eat, see, hear or speak. In her inarticulate anguish, Katherine Blackburn, 7 months old, bitten by an encephalitis-carrying mosquito in Silver Lake in November, 1984, could do nothing but scream.

Music from Paul Simon’s “Graceland” album plays:

Sing Ta na na

Ta na na na

She got diamonds on the soles of her shoes . . .

Its rhythm regulates the motions of three people manipulating Katherine Blackburn’s head, arms and legs. The child lies on her stomach, her head turned from side to side by her mother’s hands. Two of the dozens of volunteers who come to help her each day are rotating her legs and arms, creating the motions of a crawling child, motions Katherine cannot perform on her own because of her injured brain. Were she able to power her own limbs, she might be strutting to the high-stepping rhythms of Simon’s song.

She was physically forgotten . . .

And she said honey take me dancing ...

Wearing diamonds on the soles of her shoes . . .

“Good girl, Katherine. Good girl. What good work,” her mother, Jean Blackburn, exclaims. Katherine has just been patterned--a controversial form of therapy developed in the 1950s by physical therapist Glenn Doman at the Institutes for the Achievement of Human Potential in Philadelphia.

One Element of Program

Katherine, who is 3 now, cannot regenerate the brain tissue damaged by encephalitis, but the theory behind patterning is that healthy brain tissue can be reprogrammed, patterned, to take over the functions of the damaged portions of the brain.

She will do five of these patterns for 15 minutes each everyday. The patterning is one element of a round-the-clock rehabilitation program that requires an army of volunteers and an enormous expenditure of emotional energy. It has been going on for two years, years during which many doctors predicted Katherine would die, her mother says.

Katherine’s “day” begins at midnight when she is put on a respirator, which regulates her once erratic breathing, until 6 in the morning. It is during this time that Jean Blackburn sleeps, if volunteers are available. At 6 a.m. Katherine is fed soft food with large amounts of vitamin supplements Then, for 75 seconds, a plastic mask is placed over her nose and mouth, a procedure that occurs 25 times a day. By breathing in her own carbon dioxide, her mother explains, she increases circulation to her brain, which then directs oxygen throughout her body. The brain must have oxygen to function and a brain-injured child whose breathing tends to be erratic and shallow needs it even more, and needs more help getting it.

While the mask is on, “she gets her intelligence program, “ Blackburn says.

“Katherine, this is a rhinoceros,” her mother states loudly, holding up a flashcard. “It has horns on its face.” The cards all have pictures with single-word or short sentence explanations. She picks up another. “This rhinoceros is a Sumatran rhinoceros. This is a prehistoric rhinoceros . . . This is a horned animal. This is an eland.”

“Katherine, which would you rather do? Wash face? Brush teeth?” Blackburn asks. The child’s reaction is assertively negative. She looks away from both. Her mother says, “Neither one, huh.” A standard 3-year-old reaction.

Unintelligible Syllables

Katherine, a brown-eyed child with soft, curling hair and a mouth that seems to desire more than it’s capable of right now--namely speech--is beginning to imitate language, Blackburn says. They are unintelligible syllables now, her mother says, “but when I hold her and say ‘I love you,’ she responds in the same rhythm. And it happens consistently.”

They are seated on the floor of a large, rented one-bedroom house at the top of a steep, pretty street in Echo Park. The flashcards with their information bits, written in large red letters, surround them.

The point of all this is to “expose her” to information, not teach in the traditional sense, Blackburn says. It’s the same principal used at Doman’s Better Baby Institute, where healthy children are taught to read at ages as young as 2.

“The Program”--of which patterning is the most controversial part--has attracted parents with brain-injured children to Doman’s institutes from all over the globe--11,000 children in 40 years, he says.

“We fail all too often,” Doman says. “But in a world that believes that no profoundly brain-injured child can be made well, it is surprising that we often succeed.”

“For the longest period of time, the medical establishment had the assumption that the brain was incapable of self-repair, that once it was injured there was no hope for self-repair,” says Dr. Ralph Pelligra, who serves on the board of directors of Doman’s institute and is a medical services officer for the National Aeronautics and Space Administration. “That is essentially true of neurons (nerve cells) that are dead. But I think that neuroscience is establishing that the process of plasticity, or the ability of the brain to basically self-repair is possible; probably through the mechanisms of neurotransmitters (chemicals that transmit nerve impulses from one nerve cell to another) and in other ways that are not quite understood.”

The medical establishment, however, remains adamantly skeptical.

Both the American Academy of Pediatrics and the American Physical Therapy Assn. say “the efficacy and effectiveness” of Doman’s technique in treating children with neurologic and related disorders has not been proven in any scientific studies.

But The Program, Jean Blackburn insists, is the reason her daughter is still alive. Further, it’s the reason her daughter can now see, hear, eat and uncurl her arms from their contracted, rigid state, she says.

It began with the box.

“We all remember the lightbox,” says Michael Dawdy, an actor and Katherine’s first patterning volunteer. The box was a closet with a Lucite top. Under the Lucite was a bank of lights, 1,000 watts in all, and a vibratone horn, “the kind you hear at a basketball game to designate periods. We would crawl in there with her,” Dawdy says, “and flip the switch.” That would set off the lights and horns.

They did it 30 times a day “to stimulate the optic pathway until” her pupils would dilate and constrict, he says. The horns “opened the auditory connections until she got to the point where she had the normal response of a child to a sudden, loud noise--fear.”

Underlying Theory

The theory underlying the lightbox, and the essence of much of Doman’s program, is to provide brain-damaged children with “visual, auditory and tactile stimulation with increased frequency, intensity and duration,” says Dawdy, who is also the narrator of a video about Katherine’s rehabilitation program. Sufficiently stimulated, the child will eventually respond, as Katherine did, to light and sound, he says.

It was a great day, Dawdy says, when they took Katherine off the box. “Nobody liked doing it to her.” And afterward, everyone took the opportunity to get their dental worked checked, he says, the “light box period” had everyone grinding their teeth.

Jean Blackburn laughs. “The neighbors moved away,” she says. She kept asking one woman, “Don’t you want to know what we’re doing? She’d say, ‘No, no.’ I mean, here’s this kid screaming, horns blowing, but she just kept saying ‘No, no, I don’t want to know.’ ” Finally, “she moved. Everybody else in the neighborhood just gave up and came over and patterned.”

There are 35 people who help pattern Katherine. But her mother says she needs twice that many to do the program correctly.

” I’ve done everything I can,” Blackburn says. She is seated in her bedroom, stealing a few minutes to talk without interruption.

She is 39, an earthy-looking woman with fair, smooth skin and a Baroque-age figure Rubens might have imagined. Gray steaks her light brown hair.

“I’ve, I’ve,” she is anxious, tired and laughing all at once, “I’ve gotten the ice cream man to pattern.” When she has to travel with Katherine, “I’ve gotten people on the road, strangers, truck drivers. Anybody working at the hotel. The last time the phone man was here, he ended up patterning.

“I don’t know how far she can go,” Blackburn says of her daughter. “I haven’t been able to do the whole program because I don’t have enough help. Sometimes I’ve thought of moving, perhaps to the suburbs where people have more regular schedules.

“But I love the people here,” Blackburn continues. “And the people who come don’t come because they have nothing else to do.”

Her speech slows a bit. The adrenalin-driven, sleep-deprived look in her gray-green eyes remains. “It’s not something to feel sorry for me about. It’s something I need help with. It’s something I’m glad to be able to do. I’m just trying to save my kid’s life.”

In what must seem like another lifetime, Blackburn designed clothes for a boutique she owned in Los Angeles and was a free-lance wardrober for various studios.

Her income now is reduced to the minimum wage she gets from the government for staying home and taking care of her brain-injured child.

Friends have organized benefits to raise money for Blackburn and her daughter in the past. Through Jan. 1, the proceeds from the sale of art works on display at L.A. Nicola, a restaurant and art gallery at 4326 W. Sunset Blvd., will help with Blackburn’s expenses. But she doesn’t know, for example, how she will afford the trip to Doman’s Philadelphia institute next February. She must go four to six times a year to be instructed in each new phase of The Program and to have Katherine’s progress evaluated.

The Program is particularly hard on Blackburn who is “one of about 10 single parents in the world patterning.” The institute discourages single parents from participating, she says.

Her head seems to shake involuntarily, as if to ward off any negative thoughts, when she’s asked about her child’s father.

“I had Katherine because I wanted a baby, wanted her. I love her.” Her father is “away most of the time.” But he was there in the beginning, she says.

‘Never Left Her Side’

After Katherine was bitten, they were “in the hospital day and night. We never left her side,” Blackburn says.

After the child came out of a coma and was brought home, she “screamed day and night.”

After three months, the child’s father left.

Critics assert that the demands of the patterning program are too great for any family and the results too uncertain to warrant the effort.

They point to the case earlier this year of Irene Bernstein. The Pennsylvania mother was allegedly so stressed by the demands of the patterning regimen and disappointed with the progress of her son, Eric, that she shot and killed the 2 1/2-year-old boy.

Last month Bernstein pleaded no contest to a charge of third-degree murder. At the preliminary hearing, her attorney, Garland Cherry Sr., told the court that the Bernsteins had become distraught when Eric was re-evaluated at Doman’s institute the week before the shooting. Institute staff members, the attorney said, had told the family that the boy was not improving and blamed them for not following the program precisely. (On Nov. 18, Irene Bernstein was sentenced to five years probation in the shooting death of her son.)

Not only are there “no studies to indicate there is any merit to (patterning) therapy,” the Bernstein case indicates that it can cause “harm in terms of the toll it takes on the family,” says Dr. Duane Alexander, director of the National Institute of Child Health and Human Development at the National Institutes of Health in Bethesda, Md.

Dr. Herbert Cohen, chairman of the American Academy of Pediatrics committee that issued the statement questioning the effectiveness of Doman’s therapy, has asked the NIH to conduct a study to determine if patterning has any value.

“The time is ripe,” says Cohen, a pediatrician at the Albert Einstein Medical College in New York.

But Alexander says NIH has more important projects to pursue since there is no evidence to “suggest any benefit from this patterning approach.”

Further, “my understanding, from hearsay, is that about 15 years ago,” such a study was attempted. Doman refused to cooperate, says Alexander, because a scientific study would have a required a control group--patients who would receive an alternate therapy, while the experimental group would be patterned. The Philadelphia institute said it did not want to “to deny its treatment to anybody,” so the study was never done, Alexander says.

‘Beg, Borrow and Steal’

Not true, Doman says. The institute was always willing to participate in such a study if another organization would provide the control group, he says.

“Our families come from all over the face of the earth. They beg, borrow and steal to get to the institute. Not to pay us, ‘cause we lose about $1,000 for every child we treat (a year’s treatment at the institute costs $5,700. It charges, to those who can pay, $4,700.) They pay Indian Airlines, South African Airlines and Pan Am.” How could he tell such parents that half of them will be in a control group that won’t receive treatment and the other half will, he asks?

Further, when it looked as though Johns Hopkins University, with NIH funding, would provide the control group, the rules governing the evaluation of the study changed in midstream, Doman says.

It had been agreed that the parties in the study could use any measurement they wished to determine the children’s progress.

“It could be the Stanford-Binet Intelligence test or some physical test of muscles,” Doman says. “Our own tool is called the profile. It measures the progress of a brain-injured child by simply following the development of a well child from birth to 6.”

At the last minute, the institute was told that the study would be abandoned if it used its profile to measure the progress of a brain-injured child, Doman says. The institute refused and the study was never done.

He says he hopes such a study will be done one day. But another organization will have to provide the control group. And it would have to be funded by NIH or some other agency. “We are a nonprofit, tax-exempt institution and we couldn’t afford to pay for it ourselves.”

Jean Blackburn has heard all the criticism of patterning and The Program.

She has heard doctors say that there is a certain amount of spontaneous healing that occurs after a brain injury and that most likely accounts for Katherine’s progress.

“No way, this child--who had a shunt in her head to relieve the pressure on her brain--would be dead without the program. I understand that now.” The program was the first support I got, the light at the end of the tunnel. Until then,” she says tightly, “everything about Katherine was negative. I had things said to me like she would never grow teeth. She would always be constipated. She would never see. It was pretty dismal. And then, when I went there, to the Doman institute, they gave me a way to make her better. And I did.”