DOUBLE JEOPARDY: the Johnson twins’ sunny brush with tragedy
Moira was dying. Surgery could save her—perhaps— but only by giving her a living organ taken from her identical twin Nola. This is the story of the twins’ chilling gamble and its happy aftermath
AHOUT NINE O’CLOCK on Wednesday morning, May 14, 1958, Dr. Kenneth MacKinnon, of the staff of the Royal Victoria Hospital in Montreal, removed a healthy left kidney from a healthy teenager, Nola Johnson, and carried it into an adjoining operating room where another doctor. Josephus Luke, began installing it in Nola’s twin sister, Moira, who was dying of a chronic disease of both her own kidneys.
The procedure had been attempted for the first time in the world only a little more than three years earlier. It was. and still is, the first time it has been done anywhere in the British Commonwealth.
It involved chilling gambles — that Moira still had enough strength to withstand major surgery; that Nola, the healthy twin, would not hemorrhage under the knife; that her kidney, cut off from all blood supply while it was being transferred, would recover function in a new host; that it would not, when established, be vulnerable to the infection already present in Moira’s body.
For Mr. and Mrs. Gordon Johnson, the parents, it involved the decision to allow Nola to risk her life to save Moira. For Nola there was no decision: ”1 just took it for granted I’d do it,” she says simply.
For Dr. Kenneth MacKinnon, the surgeon who removed her kidney, it meant performing a mutilation operation — the cutting into a healthy
person that goes in the face of a doctor’s oath and all his training. “1 had thoughts about it,” he recalls with restraint.
The story has a happy ending. Today, two years later, the twins, with a kidney apiece, are well and happy and living almost normal lives. Indeed they manage to seem almost untouched by their brush with crisis. “I guess we don't think about it very much,” Nola says, almost apologetically.
The episode, to this extent, is over. Yet it remains as complex, as dramatic and as warmly human a story as any in Canadian medical history.
There were, as there always are in real-life emergencies, certain absurd or bizarre accompaniments. For example, because the surgery was history-making, a photographer was assigned to record the proceedings. The twins thus have access to a set of home movies, in full color and explicit detail, that is unique — and may yet start a fashion.
An even odder circumstance involved a syndicated comic strip, Rex Morgan, M.D., which chronicles the personal and medical exploits of a doctor. After Moira fell ill, and during the long anxious weeks before the operation, the comic strip developed an identical plot of fatal kidney disease in one of identical twins and the suggestion of a transplant from the healthy twin. One of the things the Johnsons had to cope with dur-
ing their crisis was a flood of clippings, letters and phone calls about the comic strip from well-meaning friends. In the end — a few weeks after the Johnson operation was over, fortunately — the sick twin in the comic strip died before they could get him into surgery.
The comic-strip episode took a leisurely five weeks from actual diagnosis to dénouement. In the Johnsons’ case rather more than six weeks elapsed. But the agonizing delay was honestly caused, by a whole complex of tests and preparations, and by a necessary untangling of a legal complication.
Moira fell ill early on the morning of Monday, March 31, 1958.
At the time, the twins were only fifteen and a half. They had three younger sisters. Lynne, Deidre and Valerie, and a baby brother. Lyall. and they had all grown up in the country on a storybook farm near Huntingdon, in southwestern Quebec, where they learned, true to storybook tradition, to drive the tractors and the jeep and to ride their very own horses. The previous fall Mr. Johnson had sold the farm and retired to a pleasant split-level brick house in Baie d’Urfé, a lakeshore suburb of Montreal. The twins, who were now in Grade 10 of the model school at nearby Macdonald College, had just finished their Easter exams. Until the moment Moira was taken ill they were just happy, CONTINUED ON PAGE 45
CONTINUED ON PAGE 45
The Johnson twins’ sunny brush with tragedy
Continued from page 15
healthy girls, as like as two peas, with freckles and sandy curls and level bluegray eyes and lots of energy.
On Sunday, a fine warm day, they sat cut most of the afternoon in their jeans trying to. get a tan; later, after a leisurely supperT Moira stretched luxuriously and said. “I feel so well.” The next morning at six she roused her mother and said she had an awful headache.
Mrs. Johnson, a vivacious, dark-haired woman with a bright, crooked smile, told her daughter to take an aspirin and go back to bed. By seven, when the household usually arose. Moira was vomiting. Between bouts, she lay in bed trying not to whimper. Mrs. Johnson recalls, 'She kept saying Tm sorry. Tm sorry.’
I asked her why but she didn't answer.” Nota, who shared her room, announced she was going to stay home with Moira.
Shortly after nine, when Mrs. Johnson was gossiping on the phone with a friend, her husband called out from upstairs, “Moira’s had a convulsion.”
Always Perfectly Healthy
By ten o'clock, when the family doctor, George Fortier, arrived, Moira was in a coma, and the uncontrollable shudders of convulsion were almost continuous.
Fortier, a big, brusque, sandy-haired young man. examined her and. in a momentary lapse of the seizures, managed to take her blood pressure. It was astoundingly high. He called the police ambulance from nearby Ste. Anne de Bellevue. "You can't treat seizures at home.” he said recently. "And I could only guess what was wrong with her. She, might be epileptic. It might be some type of hemorrhage. Or a congenital abnormality of a blood vessel, or some form of head injury. Or 1 might have guessed at severe kidney damage, but I had no clue. There was no history of renal trouble.”
Aside from the childhood diseases and a brief urinary infection that had been treated with penicillin when she was four, Moira had always been perfectly healthy.
Fortier phoned the Montreal Neurological Institute and told them he was sending in an emergency patient.
Mrs. Johnson, hastily tidied for the street, rode in the ambulance with Moira, trying to hold her on the stretcher, trying to keep the tongue depressor in Moira's mouth so she couldn't bite her tongue. “It kept slipping out, so I finally just used my thumb," she recalls. “She bit it several times." At the Neurological Institute Moira was whisked away on a stretcher and Mrs. Johnson went and sat in a waiting room. At suppertime she finally roused herself and walked down to a Murray's restaurant for an omelet and some coffee, then went back and waited until one of the nurses said there was no point in staying any longer. Just before she left she looked into Moira's room. Moira lay, still in coma, with her arms bound in gauze and tied to the
“I sat there wondering how you’re supposed to feel when a doctor tells you your child can’t live”
sides of the cot. She didn’t regain consciousness for two more days.
A routine urinalysis had already shown the presence of a kidney disease. The doctors later concluded that it must date from the brief early episode of urinary infection, though the kidneys, being slowly ravaged by stealth, valiantly performed adequately and presented no symptoms. By the next day the diagnosis had
been confirmed and the doctors knew the chronic infection was so far advanced in both kidneys that Moira already had only five percent kidney function. At most, she could live six months to a year.
The Johnsons had been told the diagnosis but it was not till a week later, after Moira had been transferred to Royal Victoria Hospital, that Dr. John Dossetor. of the Vic renal service, told
Mrs. Johnson officially that Moira would not live. “I sat there listening to him," she remembers, “wondering how you were supposed to feel.” Mr. Johnson, a shy. dark man. who has since died, mostly stayed at home through the crisis looking after the other children.
Nola hesitantly takes up the story: "After Mum talked to Dr. Dossetor she looked scared. I asked her what had hap-
pened and that was when she told me." Nola herself looks scared for a moment and blurts, “I don't like to think about it. The day Moira got sick ... or anything.”
What happened next still rather startles Dr. Dossetor, the shy, burly young Englishman who was, as a member of the renal service, in day-to-day charge of the case almost from the beginning. As a renal specialist, he was aware that a pioneer renal transplant had been accomplished at Peter Bent Brigham Hospital in Boston two days before Christmas. 1954. and that it had been done six more times at the same hospital and once in France. But he didn't quite know how to go about asking Nola if she would be willing to make the sacrifice. Though the human body can operate with only one kidney, the loss of the other removes a natural safeguard. Thus, besides facing the normal risks of major surgery, Nola would have to spend the rest of her life guarding against any threat to her remaining kidney. If she married, for example, she would have to be coddled through any pregnancy because of the increased risk of infection.
“Nola’s just volunteered"
Finally, about ten days after Moira was admitted to hospital, Dossetor explained the possibility of saving Moira's fife to Mrs. Johnson, and asked if she would be willing to talk to Nola. “Oh that's all right," said Mrs. Johnson. “Nola’s just volunteered."
Nola, in fact, had spontaneously recalled a U. S. wire-service photograph she’d noticed in the newspaper a few weeks earlier. The picture had caught her eye because it showed a woman with a tiny baby. The cutline underneath had caught her eye because it mentioned twins. The new mother was newsworthy, it seemed, because, as one of identical twins, she had been party to one of the first renal transplants in Boston. Now, faced with the doctor’s verdict on Moira, she remembered it. When Dossetor explained the hazards she said. "That's fine.”
Now began a month of tests and analyses to prove beyond reasonable doubt that the twins were indeed biologically identical — born from the same egg. For the essence of the operation is to hoodwink nature. Normally the body will graft only onto itself; it will reject any alien material. Recently experiments have been conducted with total-body radiation to knock out the body’s defenses against foreign bodies and thus trick it into accepting an alien kidney; but the results are not yet conclusive, nor has a new drug to suspend the immunity reaction, 6-MP, been proved. And in 1958 it was still inevitable that Moira’s body would destroy the kidney from an ordinary donor. Only an organ from an identical twin would be so utterly familiar that the body would own it.
There is no simple sure test for identical twinship; there are only series of observations and analyses that push the statistical odds up to reasonable certainty. Geneticists from McGill University began by examining and comparing hair color (both fight brown with reddish tinge) and texture (straight); iris color and texture (blue-gray with a narrow yellow area around the pupil); ear shape (both with unattached lobe) and tooth shape (both with prominent central upper incisor). They took finger and toe prints
and tested for the inherited ability to taste phenyl-thiocarbonide. The twins’ blood was compared and found identical for all major blood groups and many of the subgroups. A piece of skin from each was grafted to the other to see if the body could be fooled. “Look,” said Moira rêcently, pointing to a square of skin with puckered edges on her upper arm. “That’s a bit of Nola.”
On May 5 the geneticists submitted a final memo to the urology service at the Vic putting the odds in favor of identical twinship at 99.9989 percent.
In the meantime court permission had to be sought for the operation. Normally, in Quebec, the signed consent of a parent or guardian is enough for an operation on a minor. But in Nola’s case the surgery was to be performed on a healthy child. Dr. John Merrill, one of the renal team at Peter Bent Brigham Hospital in Boston, calls the morai problem acute in the case of a minor asked to donate a kidney.
But Merrill adds, “Permission has been granted on the ground that the healthy child would suffer more from the psychical loss of his twin than from the physiological loss of a kidney that can be spared.”
On Thursday, May 8, a special court order for the operation was obtained through the Superior Court of Quebec. The operation was scheduled for the following Wednesday, May 14. It was to be performed by a team headed by a vascular specialist, Dr. Josephus Luke, and a urologist. Dr. Kenneth MacKinnon, now urologist-in-chief at the Vic, who would actually remove the kidney from Nola and, later, complete the delicate link between it and Moira's bladder. MacKinnon had gone to Boston for three days’ instruction in the procedures and, on his return, practiced them on a cadaver in the pathology building.
The night before the operation, Moira nearly died. During the preceding weeks her high blood pressure and convulsions had been controlled with drugs, and the infection with antibiotics. In addition, a special diet had been prescribed and doses of protein-forming hormone administered to reduce the amount of waste the diseased kidney had to deal with.
Even so, more and more urine was returning to the bloodstream, producing a sort of poisonous intoxication. Suddenly she began to vomit again, to have fever and chills, to turn gray and finally stuporous. “Her time was running out,” Dr. MacKinnon comments bluntly.
At eight on Wednesday morning Nola and Moira were wheeled into adjoining operating rooms. In one room. Dr. Luke
opened Moira and clamped off and cut the artery and veins that were being diverted from the pelvis to hook the new kidney into Moira's circulatory system. The kidney was to be inserted at the front-right just under the appendix at the edge of the pelvic cavity, a position dictated in part by the necessarily shortened connection with the bladder. In the other room Dr. MacKinnon started removing Nola’s left kidney. Thirty minutes later he lifted it out. slipped it into a surgical tray and carried it in to Dr. Luke in the other room. Then, while Luke put it in
place and joined the arteries and veins, he went outside for a cigarette.
The essence had been speed. The brain will die in three to four minutes without its blood supply. The kidney probably can’t survive more than ninety minutes and even if it's out for shorter periods there may be later complications. Nola’s donated kidney was cut off from blood for only fifty-eight minutes—just three over the record set in Boston. The operation took three more hours to complete but the rest was routine.
Nola was at home in Baie d'Urfé again
in ten days. Moira had to stay four more weeks. Because the greatest risk was infection, her room had to be kept as sterile as an operating theatre. For seventeen days her private nurses had to change completely before re-entering if they left the room for any reason at all. She was allowed no books, radio, flowers or gifts and, for amusement, was driven to learning to read the impenetrable charts and graphs that completely papered one wall of her room. For perhaps the most complicated part of the transplant was the exhaustive postoperative analysis of
the kidney’s function, to make sure the graft was taking. Consequently such factors as Moira’s intake and output of fluids had to be so scrupulously measured that even the used dressings from her wounds and the drops of blood taken for blood samples were weighed.
Dossetor. a renal specialist, says with enthusiasm. “The kidney is an intelligent organ. It's an infinitely precise control mechanism for the balance of fluids in the body. They're like battery fluids, inside and outside the tissues, and if they're not in the right concentration the body doesn't spark properly. That’s what the kidney readjusts. Philosophically, its excreting function is almost incidental."
On June 21 Moira was discharged. During the summer she gained thirty pounds and, because of the earlier hormone injections, temporarily lost all her hair. Nola promptly cut her own hair short to keep her twin company.
In October. Moira re-entered hospital and. in successive operations a week apart, had her own kidneys—both diseased—removed. Since she was going to miss still more school because of this she had decided to take Grade 10 over again. Nola decided to do the same. Both girls also discarded the !.. M. Montgomery books that had been their favorites and. for a solid year, bought every single poeketbook on the newsstands that contained the words "doctor,” "nurse” or hospital" in the title. Both also resolved to lie hospital lab technicians when they grew up.
lu a way. their life will never be the same again. Before the crisis both had been active outdoor girls, more interested in animals and sports than in dolls and housework. “They always wanted to be outside." says their mother. Now. because of its exposed position under the thin, lazy abdominal muscle wall. Moira must be careful for the rest of her life that her new kidney receives no injury or insult. She must wade into the water instead of diving; she has had to give up
riding and field hockey and skating on a public rink. So. in sympathy, has Nola. And when Mrs. Johnson gently suggested that fast spins with teenaged drivers might be unwise the girls decided, in Moira’s words, "not to bother with boys till after wc graduated from high school.”
There is another, fundamental, change. The twins grew up so physically hard to distinguish that Dr. Fortier, the family doctor, says. "I never bothered to try.” Now. as a result of the hormones administered to Moira as part of the preoperative treatment, they are no longer so nearly alike. Moira’s voice has deepened slightly; her hair and coloring are a trace richer than Nola’s and she weighs about ten pounds more.
But in another way, the twins are just as they always were. They are still inseparable and, for both, the eventful spring of 1958 has already faded into the unreal past. Last Christmas the girls decided it would really he more interesting and practical to take a business course than to train as lab technicians. Now, this summer, the whole family is off on a trip to Ireland to visit grandfather.
If questioned about the crisis, the twins helpfully try to recall the details hut their sunniness is inveterate and they scarcely seem to remember anything upsetting. "We’ve always tried to teach the children never to make a fuss.” says Mrs. Johnson.
Perhaps it is because of this training, and perhaps it is just because they are twins, hut Moira and Nola have never really said anything to each other about the one central fact of the crisis. Moira tries to say what she wants to say in other ways. "I try to do things for Nola that I didn't do before,” she blurted recently. "If there’s something I see she wants I try to get it for her.
"Or if we have to ask for something I try to be the one who does it."
“I don't know if she notices.” Moira added with an embarrassed laugh. "I doubt it.”