Montreal is for Arms
The following is an article written by Joan Niblock in the 1960's about her first hand experience of brining up her daughter Alexandra who was affected by Thalidomide. Alexandra has also added in her own thoughts and comments (the notes in brackets). It's a very interesting and moving insight into the challenges these parents, and the families faced. The photograph shows the family at Joan and her husband Peter's 50th Wedding Anniversary, showing Alex, Peter, Joan, Shelagh and Laurel.
Montreal is for Arms - by Joan Anne Niblock
To millions of Canadians this year, Montreal means Expo 67, but to my family, Montreal means arms. Last summer, my husband and I spanned a continent in a quest for arms, and found what we sought in Montreal. In March 1962, our youngest daughter was born with tiny, flipper-like arms. Although the first newspaper reports appeared only days later telling of babies being born in Eastern Canada cruelly deformed by a drug called thalidomide, we did not then associate our personal tragedy with those more remote tragedies. The drug described had been used as an anti-nauseant in pregnancy the reports said. I knew exactly what I had taken for nausea, and it was not thalidomide.
We named the baby Alexandra Mary, and took her home. We were numb, groping about in a newly distorted world, fearful for her welfare in the years ahead, and most of all, stricken with the awesome responsibility that lay upon us. We wondered too, why our baby had been so terribly deformed. Alex was about ten days old when The Vancouver Sun carried a front-page story about thalidomide. I read it with interest. The article mentioned a blue sleeping pill and named the manufacturer. Suddenly chilled, I remembered. Early in my pregnancy, the doctor had sent up some anti-nausea pills and a physician's sample of a sedative newly on the market. I had even asked my doctor for a prescription a few days later because the sleeping pills worked so well. Oh, I remember those pills. They were blue, and there was a picture of a woman's face on the package. They were called Kevadon, and the manufacturer was the one named in the article. Frantically I groped through the medicine cabinet until I found the little glass bottle in which the prescription had come. Shivering, I phoned the pharmacy and asked if the drug was thalidomide. The druggist went to check, and returned to the phone to tell me he was unable to say because he had none in the dispensary. It had all been withdrawn. I knew then, and it will always haunt me, that for a few hours of sleep I had bartered my baby's arms.
Alex was fitted with conventional artificial arms when she was just over a year old. Her back and shoulder muscles were expected to exert a pull on a cable that would then open the hook. She mastered the technique when she was just over two, but perversely, this development led to bitter frustration for us all. Her small, inadequate muscles could not provide the sustained power needed to activate the hook more than a few consecutive times. We had heard that thalidomide babies in Germany were being fitted with arms that used compressed carbon dioxide to provide power, and we enquired about something similar for Alex. We were told that they were not yet available in Canada, nor, as far as we could discover, in the United States. Anxiously, we continued our struggle to keep our active little girl happy and interested in her prostheses, but her interest waned in spite of our best efforts. As she grew, and the devices became painfully small, she openly opposed my program of therapy.
Then, in September of 1965, Peter, my engineer husband, made a business trip abroad. While in England, he visited Chailey Heritage Craft Hospital in Sussex and Roehampton Hospital in London, where many of the UK's several hundred thalidomide damaged children are being habilitated. He came home with exciting news. The clinics in England had found, just as we had, that children with the flipper arm deformity were so frustrated by the standard type of prosthesis that, far from learning to use and like them, they learned to loathe them. The British clinics had begun using instead the carbon dioxide powered unit, sometimes called the Heidelberg Arm because it was invented by a Heidelberg engineer. The wearer presses buttons and the arms perform through a pre-determined range of movements. As the buttons can be operated by almost the feeblest muscular movement, they are ideal for children with phocomelia, where age and disability severely limit physical strength.
We were almost bursting with new hope. On the recommendation of Dr. George Elliot of the British Columbia Department of Health and Welfare, the next time Peter went east on business, he visited clinics for disabled children in Toronto and Montreal. Both centres had outstanding groups of experts researching with electrically powered limbs, but Montreal was successfully fitting children like Alex with the Heidelberg Arm. "I really believe," Peter said, "that Canada is way ahead of England on this business of powered arms." Almost all authorities we had spoken with, and we had encountered quite a few since Alex was born, had emphasized how necessary it is to start training with artificial limbs while the child is still very young. We knew Alex's training so far had been useful in its own way, but we also realized that unless we managed to provide her with a more efficient device than the one she was using, we might as well throw away the artificial arms and forget about them.
Sending Alex to Montreal was obviously the answer to this first problem, but sending Alex to Montreal, even if it could be arranged (arranging it was a very difficult and frustrating experience for my parents, especially my Mum), created for us another problem: we would have to leave her there for several weeks, and we wondered what effect this would have on her emotionally. Alex is a happy, vivid little girl, quick to laugh and slow to cry. Her tenacity amazes me sometimes; she will struggle endlessly to do things that she doesn't know she is physically incapable of doing, and so often, she finds a way. I think sometimes of the bumblebee, which happily goes about her business, unaware that according to the pronouncements of aeronautical engineers, she can't fly. But Alex has one great weakness. She needs the buttressing of the love and security of her home more than any other little girl I know. When we leave her in hospital, which we have had to do several times for surgery, we see day by day, the bright flame of her spirit grow more faint, until, after about three weeks of leave-takings following visiting hours, she becomes a pale, spiritless little person, accepting what is done to her, but trusting no one. It takes us weeks to restore her to her normal vitality, and in that time, our nights are torn while she wakes and screams aloud her nameless fears.
We weighed all these things, but we kept returning to the fact that unless she made the trip, she would not learn to use artificial arms. Someday, when she is older, she may well decide that she can manage quite adequately with her own little flippers; on the other hand, she may well find the arms become an extension of herself and expand her world. Unless we sent her to Montreal, she would never have the opportunity of making that choice. We decided our first duty was to try this way of minimizing her physical handicap, but we would mount guard against the possibility of her developing an emotional handicap. So we tried to make arrangements to send Alex to Montreal to be fitted with powered prostheses. It took a long time. There were many complicating factors, but I knew Alex had to go to Montreal even if I had to take in washing to get her there. (These events occurred before the establishment of the Canadian publicly-funded healthcare system. At this time, there was a hodge-podge of some provincial public- funding of some health services, privately insured services, and other services paid for out of pocket by healthcare 'consumers').
Finally, in June of 1966, we received word that Alex was indeed to go to the Rehabilitation Institute of Montreal. The date set was August 15th. Because of Alex's deep horror of hospitals, we knew there was no possibility of taking her to Montreal and waving her a merry good-bye the next day. If she were to accept the arms, it was absolutely necessary that she be happy at the Institute. We decided that I would fly East with her and stay up to two weeks until I felt she had sufficient confidence in her new surroundings and associates. I was even prepared to bring her home with me if I thought she would not be able to make the adjustment. My sister offered to take Shelagh and Laurel, out two older girls, during my absence. As we were also already involved with plans to move, it looked like a very busy summer.
Alex was very excited and more than a little smug. SHE was going to Montreal on a jet and Shelagh and Laurel (my sisters) weren't! Peter said that he would come with us to Montreal, and I was very relieved. He had already met the people at the Rehabilitation Institute, and he knows Montreal and he speaks French (Dad didn't really speak French; he fudged his way through.) I had never been to Montreal, and I speak almost no French. Furthermore, I am not brave in strange situations unless I lose my temper, and I was hoping not to lose my temper at all. I anticipated the trip with an uncomfortable blend of apprehension and optimism. I had worked for this trip for months, but I hated the prospect of leaving my family, and I dreaded leaving Alex alone in Montreal. Alex almost floated onto the plane. Air travel with her ought to be agony because she is so active, but she just loves to be ON a plane. She played with some toys I had bought especially for the trip, crayoned, slept, and visited with the other passengers who showed an interest in her. The little tables provided are designed for people with standard length arms, but she managed well and I was proud of her. She does like to talk however, and I confess I was glad to see Montreal appear below us. Alex was thrilled to be sleeping in a hotel, but she was so excited that Peter and I had to turn out the lights and go to bed ourselves before she would go to sleep.
The next morning we set out early for the Institute. It was a flawless day, boding well, I hoped, for the entire venture. We drew up at the entrance to the Rehabilitation Institute, just behind another taxi, and as we alighted, Alex exclaimed breathlessly, "Look Mummy! There's another little girl with arms like me!" I looked, and there indeed was another little girl about Alex's age, standing in the sun and smiling back at Alex. Her arms were very like Alex's, just a little longer, and they looked a little stronger as well. Her mother smiled, and the two of them entered the building through the wide, welcoming doors that swing open as you approach. As we went to the reception desk, we saw the same little girl striding down the hallway as if she knew where she was going.
We went ahead with the drearily familiar business of admitting Alex, and then Dr. Maurice Mongeau arrived to proceed with his examination and assessment of Alex. Dr. Mongeau is the Chief of Service, and Alex was to be under his care. He is very tall and softly spoken, but he radiates confidence, and has a tremendous rapport with children. "I don't think I want my arms," Alex whispered fearfully to me as we were shown into the little room where the examination would take place. Dr. Mongeau smiled and began to talk to her, and Alex recognized him as a friend immediately, chatting happily with him as if she had known him for a long time. Quietly, without appearing to do so, he tested Alex's ability to do various things, querying us on points that could not be immediately determined. Dr. Mongeau asked her to draw some pictures for him, and produced a fat telephone book to elevate her to the right height for writing at the desk. He drew a circle and asked her to draw one too; she obliged. Then he drew a triangle and asked her to copy it. Casually, she drew him a triangle, slightly sloppy but recognizable. Finally, Dr. Mongeau drew a rectangle and asked her to reproduce that. Swiftly, Alex drew a figure that was rectangular in intent, but not reality. He considered her work. "Is yours the same as mine?" he asked, with raised eyebrows. She looked at the drawings: "Yes," she said. "Are you sure?" he asked again. Their heads were close together, as they contemplated the sketches. Alex put her head up and said positively, "Yes." Then, with a twinkle in her eye and a waggle of her pencil, she added, "But yours is a good one and mine isn't."
Peter and I sat and observed, Peter seemingly very calm. I sheltered the hope that perhaps Dr. Mongeau would decide Alex had so much skill with her flippers that she really didn't need arms, and would tell us we could take her home with us. It was a vain hope. He quietly told us that in his opinion she would definitely profit from artificial arms. Eating, he said, would become more and more of a problem as she grew because she is unable to lift her flippers except by using her mouth as an elevator. Furthermore, she has a bad squint, and he felt it would be an advantage to have her learn to work a little further from her nose. He did say, however, that Alex could be an Outpatient. She would spend her days at the Institute, and her evenings at the hotel with me until it was time for me to leave Montreal. The Institute is as eager as any parent to avoid any emotional damage. We met several people that morning, one of them was Miss Durocher, a social worker. Blonde and pretty, she has a persuasive Gallic charm. She is an important buffer between the hospital and emotionally harried parents. I know; I saw her daily for almost two weeks. I admire the deft way she encourages one to talk about one's problems, and her sympathetic but down to earth point of view.
Alex sat very quietly on her Daddy's lap during this and other consultations of adults, but a trip to the Occupational Therapy Room delighted her. In OT, as it is usually called, she met Miss Mauger, one of the therapists. Miss Mauger promptly invited Alex to call her by her first name, Denise. By doing so, the therapists help the children to feel more at home. Alex is a little suspicious of women, but Denise won her confidence immediately. Then in came the other little girl like Alex; a sunny, round-faced cherub named Mercedes. She is a thalidomide child too. I sat and chatted with Mercedes' mother while Denise played with the two children. Alex spoke not a word of French, and Mercedes spoke very little English, but that did not appear to be a problem to either of them. They were fast friends in five minutes. By this time, the morning had gone. Someone brought a tray to OT for Mercedes as she was learning to use her prostheses to feed herself. Alex and I went to the cafeteria where we enjoyed a substantial but inexpensive lunch. After lunch, we went downstairs to the Workshop where two very pleasant technicians skillfully made a plaster cast of Alex's torso (I hated, hated, hated this process!) Later, we waited in OT while Alex was presented at a general clinic to various people who would be working with her in the next weeks.
Peter flew back to Vancouver that afternoon, and Alex and I watched his plane roar overhead. We ate in the hotel dining room that night, and during the meal, I glanced up to see Alex leaning on the table on her arms as I might lean on my forearms. We have very strict rule at home about elbows on the table, and Alex, seeing my look, gave me her best little angel smile: "I got my elbows on the table," she said. "I see," I replied. "But it's alright, isn't it?" she said brightly. Then she added matter-of-factly, "Because I don't have very good elbows." I was suddenly very grateful to be in Montreal waiting for Alex's new arms.
We lived at the hotel for the next two weeks, spending our days at the Institute where we divided our time between OT and the prosthetics workshop. Alex's prostheses were rapidly taking shape; a plastic jacket was ready for fitting on the second day. Alex's western-made arms [ made in Seattle, Washington state, and very much the old- fashioned style of artificial limbs ] had had two fibre-glass shoulder caps joined by elastic tape to support the machinery of the arms; these were the cowls. In Montreal, they called the jacket the 'camisole'. By Friday of the first week, the technicians had attached tubing and other essential fittings to the camisole, and were experimenting with the placing of the buttons. The buttons must be specially positioned for each child so that he or she can reach easily with whatever stump, digit, or chin he/she possesses. I found the workshop an impressive place. They worked so quickly, yet were obviously never satisfied with anything less than perfection. And every person we encountered had a special 'way' with children. I salute Mr. Corriveau, the genius in charge.
I was being careful never to refer to the Rehabilitation Institute as a hospital when talking with Alex; it was always 'the Institute', or "the Impichoot" as Alex called it. About the middle of the first week, as Alex seemed quite happy there, I decided it was time that I began to prepare her for my departure. Gently I told her that she would have to stay at the Institute while I went home. Her horror and her tears evoked an answering horror in me, but I knew that she needed my strength to accept the inevitability of it. I let her plead and weep for a while, then firmly told her that Shelagh and Laurel and Daddy needed me too. Alex sat without tears for several long minutes, staring out of the hotel window, then walked over to where I was sitting, pretending to read, on the bed. Soberly, she turned her tear-streaked little face to mine and said: "I don't mind if you go home for Shelagh, Laurel, and Daddy." Then she buried her head in my lap and sobbed. I picked her up and rocked her until she was calm again. I quite expected Alex to return to the subject continually, but to my intense relief, she did not. About once a day, she would say with a sigh, "I wish I didn't have to stay at the Impichoot."
We were free to do as we pleased on the weekend. Being free with a four-year-old in a strange city is not necessarily restful, and I welcomed an invitation to stay with friends. Our hosts had a little girl almost Alex's age, and Alex reveled in the opportunity to play in English again. Being constantly in contact with French-speaking children never seemed to bother her, but like adults, she welcomed the chance to lapse into her own tongue. On Monday, we found that Denise had left for her summer vacation and that the other occupational therapist, Mrs. Rosenstein, or Susan, had returned from hers. Alex was alarmed to find her friend gone, but soon relaxed when she discovered that Susan was just as fun. With my departure in mind, I took Alex to buy a packet of twenty envelopes, and addressed half of them to me at home and the other half to my mother at her home. We bought stamps, and with Mrs. Rosenstein's help, arranged that Alex would 'write' me a letter every day that she had OT. She had OT five days a week, and I calculated that I would be back in four weeks' time. "When the envelopes are all gone," I told her, "Mummy will come back." I was anxious to give some way to measure the time involved.
Alex had begun to eat her lunch upstairs on the first floor where the nursery is located. She had met other children staying there, and we found that one of them, Bernadette, was also a thalidomide child. I took a special interest in her because her arm deformity is so similar to Alex's, and I was fascinated to learn that she can swim like a fish. She had already learned to swim face down in the water, but just in the few days that I was there she had learned to swim on her back, to turn underwater at the edge of the pool, and to dive. Bernadette's open delight in her skill was something all of us shared. Watching Alex, I have often marveled at the unsuspected potential of the human body, and after watching Bernadette, I know that there is a rewarding life ahead for these children if only we can guide them into areas where they can excel. Alex began her swimming lessons during the second week of my stay; she loved it. A nurse or aide brings the little ones down from the nursery in a special cart called the pousse-pousse. The children look like a cartload of mischief as they trundle down the hall in their robes and bathing caps.
The first floor Nursery is a cheerful place. There is a spacious playroom, where the children eat and play, and next to it is the sleeping ward. The nurses who work directly with the children wear pretty dresses instead of white uniforms, and they encourage the children to call them 'auntie'. It must be hard on their wardrobes, but it certainly helps the children. Alex trembles at the sight of a woman in a white uniform, but she would shocked if you told her that Auntie Janis is a nurse - Auntie Jan is her friend. The institute will go to great lengths to make sure the children are happy there. For example, the first thing Alex noticed in the sleeping ward was that all the children except Bernadette were sleeping in cribs. She was very perturbed. She is a big girl. She sleeps in a big bed. I could see this was going to be a big issue, and I mentioned it to Miss Durocher. By the middle of the second week, we were able to show Alex a little wooden bed, a twin to Bernadette's, which had been built for her. Alex may forget [ I did not ], but I never will.
Alex had been meeting Mercedes in OT and the pool three times a week, and they became good friends. They taught me a lot about bi-culturalism. I have always been a westerner, comfortably parochial, and in a country as big as is Canada, this not surprising. But I had a sense of Canadian identity that I have never experienced before as I watched the children in their joyous, yet almost wordless communication. They concentrated on what they had in common, not on their differences. My mind long ago accepted the truth that children are free of natural prejudice, but my heart did not know it until I watched those two, weighted down with artificial arms, giggling like imps over their game. By the end of the first week, I loved them all, these enchanting tykes in training for life.
The day of my departure inexorably came. Both Alex and I were very unhappy, but while she was glum, I wore a bright, hypocritical smile. I decided to say good-bye before the swimming period, in the hopes the swimming might cheer her up a little. She was playing at a table in OT, and I said casually, "Well Alex, I have to go now." She went on playing: "Okay Mummy," she said, putting her face up to be kissed. I walked down the hall with Miss Durocher, almost unable to believe that it all had been so painless. Suddenly, there was an anguished cry behind me: "Mummy! Wait!" Alex came pelting down the hall, her little face disfigured with fear. (I remember this still to this day.) "Don't go! Not yet!" I knelt and kissed her and hugged her and reminded her that I would be back when all the envelopes were gone. Behind her, Susan Rosenstein casually asked Alex is she needed to go to the bathroom - our good-byes were being said just outside the bathroom door. "Oh yes!" whispered Alex, suddenly looking as if she might wet her pants on the spot. She ducked into the bathroom with Susan, and I tottered away with Miss Durocher, the socialworker, and had a cup of coffee. Then I went back to the hotel and caught up on my own weeping. I felt better after that and was able to put my hankie away for the rest of the trip.
I wrote to Alex almost everyday, and she 'wrote' to me every day, sending her drawings and scribbles in one of the envelopes. As it happened, Dr. Mongeau did not feel that Alex was ready to go home at the end of the fourth week, so Mrs. Rosenstein kindly sneaked some more envelopes into the pile. I had thought a little holiday from responsibility would be nice, but I discovered that the real responsibility still stays in the heart. I worried that Alex might be fretting, or that her ears might be giving her trouble, or that something might prevent me getting back as I had promised. Parenthood is the real 'tender trap.' (I find it interesting that Mum chose not to describe our reunion on her return to Montreal between five and six weeks later. I remember that I was led to a small room on the Nursery ward and there was Mum sitting on a chair quite close to the window. What I don't remember, but Mum later told me, was that I did not run to Mum on seeing her. In fact, I just stood near the door watching her. I didn't go to her until she called me to come.)
I was overjoyed to see Alex when I returned to Montreal, and we began again the familiar routine of days at the Institute while I learned how to help her with the arm therapy. The therapy was interesting. It requires concentration and some ingenuity, but Alex provides a good deal of that herself. Besides, the OTs had grounded her thoroughly in various ways and means. Peter expected to be in Montreal in a week's time, on his way home from a business trip abroad, and we hoped to go home as we had originally come - together. When Peter came, he disappeared into the prosthetics workshop with Mr. Corriveau, where he learned some of the technical mysteries of the carbon dioxide arm. Thank goodness he was there; anything technical is his forte and my weakness. The prostheses have a friction joint at the shoulder that can be adjusted manually, either forward and back, or up and down. Alex frequently adjusts them herself by pushing up against furniture. The elbow joints are powered, and she can raise or lower a forearm by pressing one of the buttons located on the front of the camisole. Another button opens and closes the hook for grasping, and yet another button will rotate the hook in a turn, up to 180 degrees. This means Alex can turn her hook points up or down to suit her activity. She operates the buttons now without thinking. She can eat - which carries her through the entire range of movements - and carry on a spirited argument with her sisters at the same time. That is real skill!
Alex's arms are not like nature's. We did not expect them to be, but many people seem to think that artificial arms are almost a replacement for real arms. Kindly people have even asked if Alex has started wearing her arms to bed yet. She wears them for several hours each day, but they must come off before she as much as lies down. For all their limitations, we have welcomed the arms as a wonderful addition to our household. They increase Alex's scope in the world around her. She sits up at the table and eats as we do, instead of like a puppy at her bowl. She eats soup with a straw, and cherries with a fork, but nobody cares, certainly not Alex. When, in the future, better arms are developed, she will be ready to use and accept them. It may be a coincidence, but her eyes have improved as well. She grumbles about wearing the arms, but I do not worry. Alex said thoughtfully one day, "Montreal is for arms, isn't it Mum? I didn't like to stay at the Impichoot, but I sure do like my arms." (Because of the almost physical response this last statement evokes in me, I must respond to it. Granted it was a long time ago, but I can't ever remember liking my artificial arms, except perhaps, for the brief bit of celebrity they gave me in new situations. I can, however, imagine me, even at such a young age, saying something like this knowing intuitively that my parents, especially my Mum, needed to hear it.)
Life is busier since Alex came home. I spend a good portion of each day working with her with the arms. The house suffers, but I have the rest of my life to chase dust. I confess, I get a thrill of pleasure when Alex leans casually on her elbows to chat with me while I work. Alex also has several hours a day without her arms. We want her to learn to use everything she has - feet, flippers, and artificial arms - to the limit of their possibilities. Thanks to Mrs. Rosenstein, Alex can boast other useful accomplishments. She can dress and undress herself with very little assistance. Toileting is still a problem; getting panties down and up again without arms is not easy. We have tried various aids, but there is always the problem of what to do with the flaps, strings or loops.
Occasionally, Alex talks about the Institute and her friends there. "I would like to see Bernadette again," she said recently. "Bernadette kissed me one day when I was lying on my bed crying." She will utter some gobbledygook, and then condescendingly tell me she is speaking French. When she first came home, she would call me 'Madame' when she was angry or anxious to get my attention. She is aware, as I never was at her age, that there is another language besides English. I think it is significant that she has awakened for comforting only three times in the night since she came home, and that, only in the first three weeks after her return. We have a big cylinder of carbon dioxide gas in the basement from which we recharge the little metal cylinders that she carries fastened to the camisole of the arms. "Hey, Mum! I'm outta gas!" is a familiar cry to us.
I cannot praise the Rehabilitation Institute enough. They have many talented people there, but they have that other essential ingredient: Love. It is everywhere: in the face of a therapist as she urges a child to attempt a difficult or painful activity; in the gentleness of a nurse as she cuddles a homesick child; in the patience shown by everyone to exacting, overwrought parents, and in the continuing success as they habilitate and rehabilitate children who might otherwise never have a chance to taste a normal life.
We saw other children there, several of them thalidomide children with varied deformities, some better off than Alex, and some much worse. The interesting thing is that only a third of the children being treated have deformities attributed to thalidomide. Thalidomide has served to focus our attention on these children, but deformed children continue to be born, bringing with them the heartbreak and the challenge.
I have learned a lot this past year. I have come to know a little more of Canada, and I have been touched by the warmth of Montrealers. I will not forget the Air Canada clerk at the hotel who worked so hard to arrange passage home for Alex and I on Friday of Thanksgiving weekend, and then do it all over again when my husband arrived. I will not forget the restaurant proprietor who would not accept payment for our dinner, and treated Alex to a strawberry sundae as well. Nor will I forget the delicatessen owner who looked at Alex and then me and said softly, "God bless her!" Those were not hollow words. They were a benediction, and I know that with people like these around her, Alex has nothing to fear from the future.
Tags: News Article