Pediatric Annals

HABILITATION OF THE CHILD WITH A BIRTH DEFECT

Leon Greenspan, MD

Abstract

1. Swinyard, C. A., ed. Comprehensive Care o/ the Child with Spina Bifida Manifesta. Rehabilitation Monograph XXXI. New York: New York University Spina Bifida Study Group, 1966.

2. Gordon. R. A. Nursery School in a Rehabilitation Center. Children 13 (1966), 145-6.

3. Bax, M- and MacKeith, R. The Results of Treatment Develop. Med. and Child. Neur. 9. (1967), 1, 2.…

Would not the Duke of Gloucester have benefited from a pédiatrie habilitation program- to correct, lessen, or prevent his deformities; to develop the ability to "strut"; to have a healthy self-image; to be accepted, not only by himself, but by others; to love and to be loved; to live positively rather than negatively?

The habilitation of the child with a birth defect can be approached from several points of view.1 The neurosurgeon is involved in the neonatal care of the infant with spina bifida manifesta. The orthopedist is frequently involved early in the habilitation program of children with musculoskeletal deformities such as arthrogryposis multiplex congenita and deformities associated with spina bifida manifesta. The physiatrist is concerned with defects that affect movement and function. The role of the urologist in the evaluation and treatment of a child with a birth defeet cannot be forgotten. The list of involved professionals is endless.

There are also co-professionals involved with physical and nonphysical deficits: the physical and occupational therapist, the speech and language therapist, the rehabilitation nurse, the educator, the psychologist, the social worker, and the vocational counselor.

Such a multidisciplined program can be valueless to all concerned, particularly to the child and the parents, if not coordinated.

It is quite apparent that we cannot "be all things to all men." However, there should be one person who is the hub of this multispoked wheel; a person to whom the patient and family can look to for interpretation of the findings, for implementation of recommendations, and for continuity of care. Without being labeled chauvinistic, that person should be the physician.

The first phase of the habilitation program is the first parent-physician contact. For an infant with a birth defect, this is often with the obstetrician early in the neonatal period. The impressions and attitudes that develop at this time may "make or break" an otherwise good habilitation program.

The pediatrician must be sensitive to the parents' feelings about having produced a child with a defect and to their feeling of guilt. The pediatrician also must be sensitive to the parents' relationship with each other and with other members of the family and to their need for parent-physician and parent-parent communication.

To the parents the child may represent inadequate fertility or virility or a failure on the part of either or both parents to satisfy grandparents. The. pediatrician must be sensitive to the parents not as a mere source of information, but as individuals looking for assistance and guidance. Knowledge of these attitudes is important, since they indicate what parental feelings will be projected upon the child and thus will be reflected in the child's impression of him- or herself. Such sensitivity, awareness, and understanding aid the physician "to brace the parents before he [or she] braces the child."

Since the pediatrician is among the first to see the infant with a birth defect, he or she should bear in mind the following questions that frequently are asked by parents: "What is wrong?" "Why did it happen?" "What can be done?" "What is the future for my child?" and "Will it happen again?"

It is the purpose of this article to serve as a guide for the pediatrician in counseling the parents about "What can be done?" It is not intended to make the pediatrician a physiatrist, but to make him or her an effective member of the habilitative team.

During the past 10 to 15 years, pediatricians have taken a more active role in the evaluation and habilitation of the child with a disability. This is a result of their increasing awareness of the total needs of these children. The pediatrician's special training enables him or her to function in a very active and productive role in the multidisciplinary program, both as a specialist in growth and development and as an expert in nutritional needs of these children and in prevention, diagnosis, and treatment of infection.

I he pediatrician may serve in one or two roles - as the primary physician involved with the general medical care of the child or as a pivot in the habilitation program.

As the primary physician, the pediatrician should not be excluded from a multidisciplined program. He or she should be made aware of what has been found and what has been recommended for the child and the parents. It is the obligation of persons working in diagnostic and habilitative centers to make the child's pediatrician aware of what they are doing for the patient. The pediatrician should not be separated from his or her position as the one to whom the family looks for guidance. It is his or her responsibility to avoid unnecessary referrals and innumerable and often duplicate evaluations. Thus, he or she may lessen the emotional and financial trauma of going from one center to another.

If the pediatrician assumes the second role- as coordinator- it is his or her responsibility to organize and implement a treatment program and, most importantly, to interpret findings and recommendations to the parents. I must state here that some clarification must be made between the roles of the pediatrician and the physiatrist, each having a pivotal role in the care of the disabled. As a pediatrician and a physiatrist, I see no reason why both cannot work together productively. There is no need for one to encroach upon the other in the care of the child with a disability. These are two specialties which can, and must, complement each other. They are both concerned with the means to effectively stimulate growth and development, movement and function.

During the neonatal period and early infancy, the pediatrician's responsibilities are parental counseling, medical care of the infant, and collaborative work with the specialists required during this period. It is the pediatrician's responsibility to provide preand postoperative care. He or she must be alert and prepared to treat any complications that may occur during the neonatal period or infancy, as well as to deliver standard medical care such as recommended immunizations. The pediatrician, in consultation with the physiatrist, will learn procedures that are indicated to prevent either static or dynamic deformities.

I he pediatrician should have knowledge of centers to which to refer, as early as possible, the child and his or her parents. It is suggested that the child with a physical birth defect, such as a limb deformity, be seen soon after the neonatal period, so that his or her immediate and future needs in terms of plastic and orthopedic surgery and physiatry may be evaluated. At such centers, parents can learn not only what can be done for their child, but by seeing other parents and children with similar disabilities they can gain a better understanding of the habilitation process.

The pediatrician must be cognizant that children with birth defects also have a nonphysical disability, deprivation, which is in direct proportion to the degree of defect. It is deprivation of normal child-parent play and lovemaking; deprivation of sibling and peer stimulation and competition; and deprivation of social, educational, and emotional stimulation.

A referral to an infant developmental program is therefore indicated to stimulate the intellectual, social, and emotional growth of the child.2 It is important that the parents are inte·'· grated into such a program to make them become aware of what their child can or cannot do and to reinforce and place in proper perspective what they have been doing for and with their child.

/\s the child develops, certain procedures may be indicated. It is necessary that the pediatrician and the specialist communicate with each other, to determine not only what should be done, but when. Is the child prepared for it? How will it affect his or her schooling? Will it improve or lessen function? The pediatrician, who has knowledge of the child, the family, and growth and development, must be brought into all considerations whether it involves bracing, prostheses, orthoses, or, of course, surgical procedures.

The pediatrician should become actively involved with the school facilities in the community. He or she should be concerned with the availability and adequacy of school programs for children with disabilities. If these facilities are not sufficient, he or she should be an advocate to make them so.

Parents often ask whether their child is able to go to a regular school. Criteria for this should be that there are no architectural barriers, that the child is able to function academically at his or her expected level, and, most important, that the child has the emotional strength.

Schools should develop programs under the supervision of a pediatrician for the adaptive physical education of the child with a disability. Such programs, in a competitive environment, offer the child the feelings of achievement and participation that are needed for healthy maturation.

At adolescence, children with disabilities have the usual problems, but they are accentuated by the disability or deficit. These problems relate to body image, sexual identification, marriage, progeny, acceptance by peers, education, and vocation. The adolescents' ability to cope with them will reflect how effective and realistic the habilitation program has been.

"Treatment involves measures aimed at curing or improving a disorder or disability. Management involves doing all that is humanly, medically possible to ease the difficulties and make life more rewarding for the patient- often multiply-handicapped-and his family. Management is the continuing totality of all treatment of all the patient's dimensionssomatic, intellectual, emotional, and social."3 ?

BIBLIOGRAPHY

1. Swinyard, C. A., ed. Comprehensive Care o/ the Child with Spina Bifida Manifesta. Rehabilitation Monograph XXXI. New York: New York University Spina Bifida Study Group, 1966.

2. Gordon. R. A. Nursery School in a Rehabilitation Center. Children 13 (1966), 145-6.

3. Bax, M- and MacKeith, R. The Results of Treatment Develop. Med. and Child. Neur. 9. (1967), 1, 2.

10.3928/0090-4481-19731001-08

Sign up to receive

Journal E-contents