When she was a little girl she called it "her rocket ship," a great pale yellow contraption with seven portholes on its rounded sides and a sound like an old man wheezing near an air conditioner.
Gretchen Stoffel's "rocket ship" is an iron lung, a machine that came to symbolize the dreaded polio epidemic for millions of parents three decades ago.
Gretchen Stoffel, now 17 years old, did not have polio. No one, in fact, knows what she had or has. All that is known is that she is almost deaf, has poor vision, a surgically fused spine and will die if she does not sleep in an iron lung at night.
The problems all began on a hot summer day in July 1962 when Gretchen and her parents, Wanda and Francis Stoffel, stopped for an ice cream cone. "Gretchen was eating hers," Wanda Stoffel remembers, "but we noticed that she was turning around and supporting her arm on the back of the car seat" in order to eat the cone.
"My husband told her to turn around . . . and sit down and eat right," said Wanda Stoffel, "but she couldn't do it."
It was the beginning of the physical deterioration of Gretchen Stoffel, and over the next 15 years it would baffle dozens of medical specialists, frustrate her parents and ironically, turn Gretchen into an eternal optimist.
Despite the efforts of some of the country's top medical minds, it was Wanda Stoffel who came the closest to solving the mystery of Gretchen's condition when she began to give her daughter massive doses of vitamins in the belief that "you can't just sit and watch someone deteriorate."
But that came much later.
When their 2-year-old daughter's weakness became pronounced, the Stoffels decided to take her to a neurologist at an Army hospital in Takoma, Wash.
"They put her in the hospital and did a muscle biopsy in her left upper arm . . . and the results came back that it was nerve involvement, not the muscle." said Wanda Stoffel during a recent interview at the Stoffels' home at Andrews Air Force Base.
Frank and Wanda Stoffel were told their daughter was suffering from an incurable, irreversible degeneration of the nervous system, which would soon kill her.
"He told me there was nothing they could do," said Stoffel. "Just take her home, keep her comfortable and enjoy her," and in just those words. And that's pretty hard to take.
"Well, we took her home and I sat and held her and watched her. I wouldn't let her cry, or anything. I was really afraid. But she didn't do what he said she would. She wasn't getting any better, but she wasn't deteriorating the way he said she would. Her lower extremities were still good and she was running around everywhere."
But then one day when she was in a child care center at a bowling alley, Gretchen fell and began to cry. "She became unconscious and was lying on the floor, blue. Fortunately a couple of my friends had had first aid and gave her mouth-to-mouth resuscitation. They told me they didn't hear a heart beat, it was so faint. Her color returned but she didn't regain consciousness."
Gretchen was rushed to a local hospital where docters performed a traecheostomy, an emergency procedure to cut an air passage in the throat. She regained consciousness during the pocdule and acted as though nothing had happened.
The physicians advised the Stoffels to keep a tube in Gretchen's throat permanently. They feared that Gretchen would again have difficulty breathing. "We talked it over and Gretchen at that point loved to talk, she was very uncomfortable not being able to communicate and if it was only going to prolong her life two or three months, and make her miserable, we decided it wasn't worth it and told them to take it out," said Stoffel.
The episode in the bowling alley proved to be the first of nine times that Gretchen simply stopped breathing. It was also the most serious. Each succeeding spell required only 24 hours observation in a hospital.
By the time she was 3, Gretchen's parents, seeking another medical opinion took her to Seattle for an examination by a noted neurologist. He gave the child a myelogram, a test in which dye is injected into the area around the spinal cord so that it can be seen by an X-ray.
"He literally ran into the room where we were sitting and said "it looks like there's widening in the spinal canal at the top of the spine. We'll study the film and it could be something operable, or it could be something inoperable. But it does look like there' something up there."
Because they were having great difficulty overcoming the pneumonia, one "old gentleman doctor, who had dealt with iron lungs said "let's try an iron lung. If she will tolerate it, it will help her clear her lungs," Wanda Stoffel recalled.
"So they got an adult one from down in the basement, cleaned off the cobwebs and put her in it about 3p.m. and it was just marvelous.She didn't fight it and it took over her breathing for her. She was happy and the doctor said " it will take a while for her to learn to swallow and eat in the iron lung." Two hours later she was eating her dinner."
That was the beginning of Gretchen's first years in the iron lung. After she left the hospital, she did not need it during the day. But her breathing slowed down so much when she slept that she had to spend her nights in the iron lung. The machine, a so-called negative pressure respirator sucks the patient's chest up, and then allows it to drop, forcing the lungs to inhale and exhale air.
When the Stoffels were transferred to Andrews, where Col. Stoffel is now a deputy commander of an air evacuation wing, they were flown on a Medevac plane with Gretchen's "rocket ship."
Once again the child, by then 3 1/2 years old, was seen by specialists, this time at Walter Reed Army Medical Center and the National Institutes of Health. And once again the experts had no answers. Physicians at NIH were, however, able to wean Gretchen off the Iron Lung, and she remained out of it until about 1973 when she was 13 years old.
But, earlier when she was in the fourth grade, her hearing and eye sight had begun deteriorate rapidly. Within a year she was in a special school for the deaf and needed magnifying glasses to read even large print.
At the same time her spine, lacking any support from the weak muscles in her upper body, began to curve so severely that she needed an operation to make it straight.
Because she was confined to bed in a body cast for three months after the operation. Gretchen's muscles further deteriorated and she was returned to the iron lung at night.
"One night I just happened to wake up and I heard Gretchen," said Wanda Stoffel. "I looked in her bedroom and she had gone to the window and opened it and was breathing out the window. I asked her what was wrong and she said he just wanted some fresh air. Gretchen never wanted to complain, and didn't want anyone to know she was uncomfortable. But that was when they decided to put her back in the iron lung."
As Dr. Peter Holbrook, who treated Gretchen for a few years when he was a young pediatrician at Andrews and recently after he became the head of the intensive care unit at Children's Hospital National Medical Center, explained it, "if she wasn't in the lung at night she'd develop progressive respiratory failure."
"Some people thought she had Ondine's Curse," said Holbrook, "a rare syndrome in which people don't breath when they go to sleep. She breathes, but her respiration effort isn't sufficient." The carbon dioxide builds up in her system and she has pounding headaches and weakness.
Shorty after Gretchen's surgery, when she was 12 and her brother Scotty was 4, a teacher told the Stoffel's that Scotty appeared to be having trouble with his eyes.
"It just about destroyed us," Wanda Stoffel remembered. "They had told us they didn't believe it was a hereditary type thing. Scotty had been a normal baby, just like Gretchen . . . But we took him to Hopkins for testing and they said he had optic nerve atrophy, just like Gretchen . . . Then he started getting weak in his" arms as well.
"I didn't know what to do," she continued. "I prayed an awful lot. I have to tell you that if I didn't believe in God, if I didn't have the faith I have, we'd never have gotten through this.
"We came home from Hopkins and we were very down, defeated, more or less. But that gets you nowhere. I prayed an awful lot and I just felt I had to do something. You don't just sit down and watch somebody deteriorate, and medically there's nothing you can do - so I guess it was in answer to prayer, but I started reading up on vitamins.
"I started with Adelle Davis and I read her books . . . My husband said, 'Okay, we're not going off the deep end You have to read the pros and cons'"
Wanda Stoffel took her new vitamin theory to Holbrook, who was then the children's pediatrician. Unlike most physicians, Holbrook did not laugh at the idea. Rather, he helped Stoffel establish a vitamin program for Scotty that involved giving him about three times the recommended minimum daily dose of all the ajor vitamins.
"We did it with Scotty first, because with Gretchen you didn't want to fool around." Wanda Stoffel said. Within two weeks she could see an improvement in her son, Wanda Stoffel said.
She told her vitamin story to Dr. John Freeman, one of the world's leading pediatric neurologists, and the man who was treating the children at Hopkins. "He smiled at me and listened and sair. Let's wait. You keep a record and let's see what happens . . ."
All concerned agree that Scotty got stronger and his vision improved. "So what we said was, 'All right, if it's vitamins, maybe we ought to do this in a double blind fashion,'" said Freeman. He had a Hopkins pharmacist mix up two vitamin preparations. Neight Freeman or Wanda Stoffel knew what was in either one.
"Well, we put him on the first vitamin preparation and it was very clear that over about six weeks he got worse," Freeman said. "He became sweaty, his vision got worse and he got weaker. This was documented not only by me but by the physical therapist who was testing him at the Air Force base.
"So we said, 'All right, what wasn't in vitamin preparation number one should be in preparation number two. . . . After about four day on preparation number two he, started to get better. At this point we broke the code and it turned out that vitamin preparation number one had all the vitamins in it she had been giving him and number two had only four vitamins, A.C.D, and E.
"We said 'That doesn't make sense, because A, C, D, and E were also in preparation number one as well . . . But he clearly got worse and then he clearly got better - which is why we do this in a double blind fashion," explained Freeman.
The experiment continued, with first one, and then another, vitamin being taken away until Scotty was only receiving vitamin E.
"On vitamin E alone for about six weeks or two months he continued to do very well. Then he began to deteriorate . . . so we said 'we'll add back vitamin A', and he continued to deteriorate," Freeman continued. "So finally we gave up and put him back on everything and he improved and has continued to do well for a year and a half."
Gretchen, who was also put on vitamins, showed some improvement. Her vision improved so much that she could read newsprint without glasses. Her hearing did not improve, however, nor did her physical weakness.
She continued to attend special education classes in Prince George's County public schools, where she has completed the first half of her junior year. But by the fall term this school year her spine was again so curved that her appearance was seriously distorted and physicians recommended a second operation to complete the fusion of her spine."
Frank and Wanda Stoffel told Gretchen that she and she alone had to decide whether to undergo the risks of being anesthetised for surgery.
"I wasn't sure about this one," Gretchen said during a recent interview in her bedroom, with it's white and yellow canopied bed and pink shag carpet.
"I wasn't so sure it was going to help me, I had doubts about it. I thought it was the best thing because I was really getting pretty bad and soon I might not be able to walk, and I should take another chance. It's better to take a chance and then not be able to walk than not take a chance and not be able to walk."
She underwent the surgery, which was apparently successful, and is now home recovering. She spends her days in her room reading gothic romantic novels - "they all have happy endings," said her mother - at the rate of up to 15 a week.At nights she is carried down the hall to the spare room where the iron lung is kept.
She looks forward to "going back to school and finishing my education. I'd like to get a college education and I'd like to be a counselor and work with handicapped people, so I'd help people. I feel so many people have helped me and I want to try to help other so many things that I know what other people have gone through."
She recognizes that she was missed many things in growing up. She has never ridden a bicycle, never physically exerted herself and, at 17, has never had a date or been to a dance.
"But I feel like I've learned something; I gained something else. I think I've gained something else. I think I've gained an understanding of other people who have problems becase I've gone through it," she said, carefully watching a reporter's face to read his lips.
While Gretchen feels she has learned from her misfortune, Freeman has only been puzzled.
"It's some kind of disease that affects the nerves, and only particular nerves, and it would appear that it is responsive to some vitamins, although it is not entirely clear what vitamins it is responsive to," said the neurologist.
"I don't know how to go any further in determining which vitamins it's responsive to . . . I've talked to a number of vitamin experts but nobody really knows how to go about studying this problem.
There has never been a case like Gretchen or Scitty's described in the medical literature, although Freeman said he is "sure they're not the only ones in the world with this thing."
Freeman said he has not yet written the case up, other than to prepare an abstract. "It's a hard thing to write up just because I don't have enough to write up. It's really a question rather than an answer, and the literature likes answers rather than questions."