Limb-Deficient Children At Chailey Heritage
Toni J. Evans
This article appeared in Medical Social Work, Vol. XVIII, April, May 1965. It is reprinted here by permission of the author and publisher.
There is a group of twenty-four limb-deficient children at Chailey, most of them the result of the drug Thalidomide taken by their mothers during pregnancy. They comprise only a small fraction of these children, most of whom are looked after in their own homes and attend various limb-fitting centres at intervals for short spells.
But members of our group have some characteristics in common. Firstly, most of them have multiple disabilities, either affecting all four limbs or visual and hearing defects, facial paralysis and even brain damage, heart abnormalities -in fact they are physically more disabled than most of the children looked after in their own homes. Secondly, almost all of them had been completely rejected by one or both parents at birth and had come to us via children's wards or institutions; some were already in the care of local authorities; some had been visited by their parents once or twice since birth, some not at all. They were a group distinct from other children at Chailey as they were and, of course, are very near in age and presented all of us with many new problems.
Before I go any further, I had better briefly explain Chailey Heritage. It has two parts - interchangeable and intermingled. One is a residential hospital school for disabled boys and girls up to the age of sixteen. They have to be ambulant in the wide sense of the word, which means that a certain number of wheelchair cases are included, and they have to be independent for dressing, feeding and toilet. There are about 120 of these children at school. There is roughly the same number on the hospital side. These are children who have to be taught in wards, sometimes in bed. They also stay until the age of sixteen and have the same education as the children on the school side, the only criterion for instruction being educability. It is more likely that the limb-deficient children will belong to the latter group; at the moment they are attending nursery school on the ward side. Chailey is in many ways an unorthodox place, as any such place would necessarily be, where the children are usually not sick but physically handicapped. They spend all their growing years here, many of them with the same background of an unstable home and many - very many - with emotionally disturbed parents.
Chailey is truly united in working for the children and there is the closest cooperation between all departments. A great emphasis is put on the social aspect; and the medical social worker has always been an important part of the Chailey team which, for the purpose of conference, usually comprises the medical staff, matron, the sister-in-charge of the child's ward, the psychiatric team of consultant psychiatrist and clinical psychologist, head master and senior mistress, superintendent physiotherapist and staff concerned, group occupational therapist and staff, speech therapist, remedial gymnast and, of course, the social service department.
I was appointed to the hospital side in April, 1964, and one of my great concerns became the group of limb-deficient children. I got to know them as well as it is possible to get to know growing children in a comparatively short time. I watched them during their play, at bedtime, without their artificial limbs; with legs and artificial arms in physiotherapy and occupational therapy; with strange visitors and, very seldom, with personal visitors of their own. They cling together as a group, at ease with staff and official visitors, secure in the place they know; they suffer and pine when separated and they often scream if taken outside Chailey. The exception are the children whose parents visit and have them home for regular spells.
Any social work with children means, to a large extent, work with their parents, and after getting to know the children I turned to the parents, trying to establish contact where it was most necessary. I visited personally wherever possible and when the families lived too far away I contacted colleagues who had met the parents before. At Chailey there are children who come from all over the country and visiting is not the same simple thing as in ordinary hospitals. But distance is not the only reason for staying away.
As soon as I started to meet the individual parents of the limb-deficient children I realised that each of them had countless difficulties ranging from emotional to simple and practical ones. Many of these problems seemed common to most parents. I met during the same time the great concern felt by all members of the staff about the emotional development of the children and also the concern that rejecting parents might reject more as the child grew - became less of an attractive baby and more of a complicated and less attractive child. A staff conference was called in August and the immediate results of our discussion were (a) to organize and to invite all parents to a special Conference in the autumn and (b) to arrange for weekly "taking out" afternoons for our "deprived" children.
The latter have proved very successful. Children are taken singly by members of the staff on shopping expeditions to nearby towns, to tea in private homes, to farms, etc.
As for the Conference, an invitation was sent to all parents, explaining that we felt that there were so many problems that concerned them all that these could possibly be discussed together with advantage. Financial help with fares was offered, as well as accommodation and also care for any other children who could not be left behind. The response at the beginning was as poor as we expected, but by plugging on, smoothing obstacles, arranging for car-hire, etc., encouraging the timid ones, thirty-one parents (of seventeen children) arrived on Sunday, November 1st, some from as far as Edinburgh, Cheshire and Devon. With staff, the other children and the people who had kindly agreed to give up their Sunday leisure to help, over sixty people were involved. I was fortunate in obtaining a grant from the Lady Hoare Thalidomide Fund and Matron arranged the catering for all participants for the Sunday.
The programme will give you an idea how the Conference was planned:
9:45 A.M. — Introduction and brief general discussion.
10-10:20 A.M.— Films.
10:30-11 A.M.— Children with Therapists in Workshop.
11:15-12 Noon— Three Parent-and-StaffGroups :
Group I — In O.T. Room
Group II — In sections of Workshop
Group III — In sections of Workshop
12-12:45 P.M. — General Discussion in O.T. Room.
1-2 P.M. — Buffet Lunch for parents.
2-2:30 P.M. — Individual interviews with staff for parents who wished to see them.
A most interesting part was the time when the parents met their children at their ordinary play with all their artificial limbs. Their arms are fitting to a jacket and worked by a carbon-dioxide cylinder triggered off by touching a minute lever; their legs are of the "rocker" type and the children have as yet no hip flexion.
Perhaps the most valuable sessions were the Group Discussions. Many of the parents spoke of their first reactions; of their fear of the time when the child would realise what had happened; how to explain; how to cope. Many of them thought of their future, their education - would they ever be able to do a job in the outside world? Others again had to cope with staring and unhelpful strangers or friends, and all of them had practical problems which would only increase as the children grew.
One of the outcomes of the Conference will be suggestions on higher levels for special provisions of aids and helps, consideration for specially constructed furniture and wheelchairs; and of course, the important point was establishing the first link with these parents. We felt that we had made a valuable beginning and, with the parents' agreement, are organising a second Conference in the summer of 1965. I am hoping to be able, in the meantime, to meet the parents who had not come at all, who had, in fact, never replied to the original invitation.
For all of us some of the problems connected with the limb-deficient children are new, and our awareness and knowledge grow with the children. We cannot make the children "normal" physically but we can attempt to help them to accept and live with their disabilities and develop the faculties they have got. In the days of transistors, microswitches and computers, many things can be done; and once the child has put his legs and arms on, he or she may be able to cope. At present, they seem to be different persons with their arms and legs on. Will that always remain so? Will we invent aids they can keep on, and not rely on outside help for many things? Will they live "outside"? All this and much more the parents want to know for the future. If we can get the parents to be behind the children as a positive factor, their future might be made less unstable.
Before discussing reactions and feelings of our limb-deficient children in greater detail, I thought it might be valuable and relevant to break up into special headings the social circumstances of these children and see if some common denominator could be found. As you will see from the following figures, it is hard to find anything that the parents of these children or the children themselves might have in common.
1. Social Background
Working Class: 13
Middle Class: 7
Professional Class: 5
2. Parental Relationship
Parents Divorced: 1
Marriage Breaking Up: 1
3. Number of Children in Family
Only Child: 5
Other Older Children: 12
Other Children Born Later: 8
Behind these figures lies the heartache of children not wanted, rejected, children starved of what they most need to develop fully: parental love.
It is disturbing if any disabled child is born into a family. There is first of all the feeling of guilt, not always shared by both the parents and often turning into threats and accusations. This might result in an immediate rejection of the child by one or both parents. If this guilt feeling has arisen, it might always remain in the family as a stress to be borne by the whole family. If the child is not rejected by the parents, a tremendous process of psychological and physical adjustment begins at birth and never ends. If the family is large, an already over-burdened mother has to fit in the special care and affection that a disabled child requires: should she give so much more of herself, her time, to the disabled child and neglect the others? is it right to entrust care of the disabled child wholly or in part to other people? how will the other children react to all this? If it is a first child, the awful dilemma arises: will other children born later be disabled also or will the mother have time for other children? In the case of thalidomide-damaged children there was only the question whether there would be enough time left to manage more children. And as the children grow another dread a-rises: when will the child notice and ask why he was born this way and in the case of the mothers who had taken the drug "Distaval" shall we tell the children and will they ever be able to forgive. In some families the devotion of the mother to the disabled child has meant that she has neglected to fulfill her role as wife and marital difficulties might result. Added to this is the financial strain; the need might arise for domestic help in the house, journeys to hospitals, clinics, treatment centres, additional acquisitions in the house. If the child is admitted to a specialized hospital, there is the strain of regular and continuous visits, not for a few weeks or months but for years; of planning and adjusting the normal family's life round the existence of the disabled child; of the stares and tactless behaviour of strangers or neighbours or friends which the family often have to suffer.
There are several possible reactions to all this, and from now on I will bear in mind limb-deficient children only. The parents feel it is their duty to bring up this child at home with perhaps short breaks at a special hospital for adjustment of their artificial limbs, for surgery to their limbs or for other surgery and for treatment of the other disorders which may be associated with this condition. Many have done and are doing this and from other workers I understand that the strain on the families is beginning to tell and that it might be necessary to find ways of relieving the families of the care of these children for regular spells. The children are also growing and the sheer physical effort in looking after them might become too great for the mother alone. There is also an increasing danger of injuries through falls; a limb-deficient child cannot protect himself during a fall and our children at Chailey wear "crash helmets" to protect their heads when falling. They walk with a rocking movement on lower prostheses, fixed with a pelvic girdle. I would describe it as "sitting in their legs" and often the compressed carbon dioxide (CO2) cylinder which operates their artificial arms is slotted into their legs. Attempts have been and will be made to send these children from home to ordinary schools. Our belief at Chailey is that this may not prove to be a satisfactory arrangement for many reasons: greater fatigue through wearing artificial limbs, special consideration about heights for school desks, dining room tables, etc.; steps which are present in most schools; the necessary special toilet arrangements and the increased responsibility for the teaching staff because of the vulnerability of the child (or at the other end of the scale over-fussing the child to the point of making a mascot of it). Also, although the child may be of normal intelligence the rate of his development and attainments might be slowed down because of his physical disabilities and consequent lack of normal experience and it might be a great drawback for him to compete in the same class with non-handicapped children.
In most ways our limb-deficient child is really two children. The one is moving on artificial legs, upright as others, getting from place to place, grasping with power-operated hooks what he wants. Having "his" legs and "his" arms. And then there is the same child, without arms and legs, wholly dependent on somebody for everything or, in less severe cases, for almost everything. These children have to make this tremendous transition from one into the other several times a day.
Then there are the parents who for all sorts of reasons reject the child from the moment it is born and the child is put into an institution. There is, for example, Walter now three years old. Father, a lorry driver, threatened to kill his wife and the baby, if she brought him home and to walk out with their other, normal children. The mother gave in and Walter remained in the hospital and was later admitted to Chailey Heritage. For almost two years much effort was put into trying to make the parents accept the child, mostly through the medical social worker who had known Walter's mother in the hospital. It was evident that the mother could have been won over, but was afraid that her husband would carry out his threats of breaking up the family and she was not strong enough to stand up to him over this. After a further time the parents gave permission for Chailey to find an "Aunt" who would visit regularly and accept him into her own home for holidays. Such a family (eight of our children are "in care" or have visiting "Aunts") was found but, by then, Walter had been for so long without individual love and attention that it took many months before he accepted his new family. He screamed at the sight of them, clung to Sister and the ward, and only now after many months and two holidays are things improving. Walter's "family" are very understanding and they love him very much; they know about his parents' rejection and will continue to give Walter the love and secure background he needs. The link with his own family is not completely severed as a grandmother has been discovered who is willing to receive news of Walter's development and if the opportunity arises pass it on to Walter's mother. In some cases the visiting "Aunts" correspond with the real parents and in all cases they are familiar with the child's background.
It is by no means always possible to say that there is a clear case of rejection or acceptance, often because of the psychological make up of the parents - sometimes for other reasons. There is Fred, also three years old. His father affirms his devotion to the child but may not be seen or heard of for three months or longer, although he lives within visiting distance of Chailey. He has had many changes of jobs and many different addresses since Fred was born. His mother is often outspoken about her feelings of losing interest and yet she does not want anybody else to give Fred what she feels she cannot give. Fred is an only child and his case is typical of many of our limb-deficient children: a reluctant acknowledgment of their existence, a distant acceptance, a relationship that is so insecure that the slightest ripple might disturb the balance. For some of the reasons for these parental attitudes we must go back to the time of the baby's birth and the way the birth of the limb-deficient child was handled. In almost all the cases interviewed profound mistakes were made, so profound that they are having a lasting effect on the child and his family. The mistakes were made by nurses, midwives and medical people alike, regardless of whether the confinement took place at home or in the hospital. Mostly the child was bundled away immediately after he was born and the mother was left in suspense; some time later she was told that the child was not right and (a) he would probably die or (b) he would be better taken away and the mother should forget all about him, with the added advice to have another child as soon as possible. One of our mothers had to fight everybody concerned to be finally allowed to see and to hold her own child. Very few of the mothers of these children were given the necessary advice and support at a time when they needed it most. And this, of course does not apply only to mothers of limb-deficient children, but also to the mothers of other children born with disabilities.
Philip is a case where a father has helped his partner to overcome her rejection and accept the baby who incidentally has a severe four-limb deficiency. She was also helped by the psychiatrist soon after the baby's admission to Chailey. Philip, who is the younger of two children, is now a happy little boy, soon to start formal schooling. He has a fairly high I.Q. and spends term-time at Chailey and all his holidays at home. (This right balance of home, hospital applies for only five of our children.) However, this happy relationship does not make the family a "normal" family. There still is the practical and emotional problem of having a disabled child in the family. Soon Philip's parents will have to extend their house to create a bedroom, shower and toilet downstairs. His mother has overcome the strain of being seen with a child with artificial limbs but that still does not solve the practical problem of shopping with a child that tires easily and yet cannot bend in his legs and be put into a push chair or for that matter into a wheelchair. We have overcome this problem with one of our very small children and now he goes for walks and shopping standing up in a shopping basket on wheels that has been slightly modified. In time, there is some hope that equipment will improve.
As I said in the first part of my article, the solution to the problem connected with the management of the thalidomide damaged children is only in the beginning. The very great number of these children who were all born almost at the same time will have contributed to our understanding of what a disabled child means to himself and to his family, and it will also have speeded up the construction and production of hitherto unknown aids. Our children are still too young to talk about it to us. They behave very much like any "normal" children at the same stage of development and adapt, improvise and compromise very well. But at the same time in bed or without their limbs their frustration is very evident. To us, the staff, they are "our" children.
Toni J. Evans is a Medical Social Worker Chailey, Sussex, England