CHILD HEALTH INSTITUTE

H.E.W.-Additional Assistant Secretaries

WEDNESDAY, FEBRUARY 14, 1962

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON HEALTH AND SAFETY OF THE

COMMITTEE ON INTERSTATE AND FOREIGN COMMERCE,

Washington, D.C.

The subcommittee met, pursuant to recess, at 10:10 a.m., in room 1301, New House Office Building, Hon. Kenneth A. Roberts (chairman of the subcommittee) presiding.

The CHAIRMAN. The subcommittee will please be in order.

Mr. Dominick.

Mr. DOMINICK. Mr. Chairman, if I may, I should like to have inserted at this point in the record a statement which I have received from Dr. C. Henry Kempe who is a professor and chairman of the department of pediatrics at the University of Colorado Medical Center in Denver, Colo. I should have considered it both an honor and a pleasure to present him to the committee had he been able to be here; however, in presenting his statement, I should like to point out Dr. Kempe's excellent qualifications. He is an eminent member of the medical profession and a very highly regarded member of the faculty of our University of Colorado. His statements are deserving of sincere consideration.

The CHAIRMAN. If there is no objection, the statement of Dr. Kempe will appear at this joint in the record.

(The prepared statement of Dr. Kempe follows:)

STATEMENT OF DR. C. HENRY KEMPE

I am Dr. C. Henry Kempe, professor and chairman, department of pediatrics of the University of Colorado School of Medicine, Denver, Colo., appearing in behalf of H.R. 8398 the bill to create a new Institute of Child Health and Human Development, and elevate the level of general medical sciences to Institute status. I am a member of the Board of Scientific Counselors of the Division of Biologics Standards of the U.S. Public Health Service, a member of the Committee on Immunization of the Armed Forces Epidemiological Board, the chairman of the Program Committee of the American Academy of Pediatrics, and a member of the American Pediatric Society, the Society for American Pediatric Research, and other scientific groups.

I feel that the establishment of an Institute with marked emphasis on human developmet would have a profound influence on child health. Research in the area of child health and human development of a basic nature is urgently needed. The new Institute will bring together the talents of obstetricians, pediatricians, psychologists, child psychiatrists, sociologists, anthropologists, geneticists, and embryologists. Everyone dealing with adults from the physical and emotional point of view is agreed that basically patterns of emotional and physical health in Îate life are almost totally dependent on influences which are brought to bear be

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fore and during birth and in the years of early childhood. Without duplicating any activity of the existing Institutes of the NIH the new Institute would be focusing on developing aspects of life particularly its relating to pregnancy, prematurity, mental and physical retardation, and the large area of birth defects. The human wastage and increditable hospital costs in the fields of prematurity, physical and mental retardation, and other birth defects are great, to say nothing on their effect of family life. I believe the ultimate importance of the new Institute would be just as significant to the health of America as were the pioneer efforts of President Theodore Roosevelt in initiating the 10 yearly White House Conferences or the establishment of the Childrens Bureau. The new Institute will fill an unmet need in the present structure of the National Institutes of Health which are basically disease orientated. I hope that the committee will give favorable consideration to these views and endorse this important proposal.

The CHAIRMAN. Our first witness is Mrs. Elizabeth Boggs, past president of the National Association for Retarded Children.

STATEMENT OF ELIZABETH BOGGS, PAST PRESIDENT, NATIONAL ASSOCIATION FOR RETARDED CHILDREN, AND PRESENT CHAIRMAN OF ITS RESEARCH COMMITTEE

Mrs. BOGGS. My name is Elizabeth M. Boggs, and I am past president of the National Association for Retarded Children, and I am presently chairman of its research committee. I want to speak to you partly as a mathematician, which is how I was trained, and partly as a mother.

As a mathematician, I speak for myself, but, as a mother, I speak, I think, for some 50,000 families known to the National Association for Retarded Children for whom this new burgeoning in the biological sciences is coming about half a century too late. I want to speak to the urgency of the accentuation of research in this area.

During the war my husband was engaged in the development of some of the giant radar jamming tubes that were used in the battle of Britain, and I was involved in the development of the implosion device used in some of the early atomic weapons. About 2 weeks after the war was over, our son David was born, and I hope you will not think it unbecoming of me to say that we looked forward, not only to the personal pleasure which we hoped to have in him, but also to the opportunity which we hoped he would have to be an asset to his Nation.

This was not to be.

When he was about 10 days old, he manifested an acute infection which, as it now turns out, was the cause of very severe impairment. Today at 16 he is brain injured, cerebral palsied, aphasic, and, above all, severely mentally retarded.

These are neurological impairments, but I want to point out that it would have been in the hands of the pediatrician and the obstetrician to have prevented these developments, had they had the knowledge and the know-how at that time.

The CHAIRMAN. Mrs. Boggs, I am afraid we are not hearing you. Let me see if we can get our sound system working. Now, it is ready. Mrs. BOGGS. It is too late for our son David, and I think it is probably also too late for some 200,000 children whose mothers are currently expecting their birth. But what of the children who will be born in 1970 and in 1980? I submit to you that time is now running out for them. There is urgency. When there is urgency, it is necessary to mount a variety of approaches to the problem.

We demonstrated this in the last war when we knew that there was a need to develop sources of fissionable uranium, and we did not fish in the grab bag and pull out just one approach to the problem. We mounted, simultaneously, a variety of approaches which mobilized in different ways the resources of manpower, and otherwise, of the Nation.

I say to you that the National Institute of Child Health and Human Development, which is here proposed, represents one of these new ways of organizing or mobilizing resources to attack a problem which is urgent. I feel that the establishment of this Institute will add impetus and materially accelerate the development of the new knowledge on which the welfare of the children of future decades very materially depends, and I strongly urge, on behalf of our association, and on behalf of these children who are yet unborn, the adoption of the bill which is before you.

Thank you very much, sir.

The CHAIRMAN. Thank you, Mrs. Boggs. There may be some questions from the committee.

First of all, I would like to thank you for such a strong statement. and to compliment you on the statement you have made. questions.

Mr. Nelsen?

I have no

Mr. NELSEN. I have no questions, but I wish to compliment the lady for testifying. Obviously, she knows her subject well. Thank you very much for a very interesting and very informative statement. The CHAIRMAN. Mr. O'Brien?

Mr. O'BRIEN. Mr. Chairman, I would simply like to say the proponents of this bill are very fortunate in having you as their leadoff witness. I like the very personal and human touch which you have supplied.

Mrs. BOGGS. Thank you very much, sir.

I appreciate your courtesy in allowing me to come on at this time. The CHAIRMAN. We heard about your other meeting and we were glad to.

Dr. Margaret Mead, American Anthropological Association, 1530 P Street NW., Washington, D.C.

It is a pleasure, Dr. Mead, to welcome you before this committee. We know of the fine work you have done in your field. You may proceed with your statement.

STATEMENT OF DR. MARGARET MEAD, AMERICAN ANTHROPOLOGICAL ASSOCIATION, WASHINGTON, D.C.

Miss MEAD. Mr. Chairman, I am Margaret Mead, of the American Museum of Natural History, and a past president of the American Anthropological Association. I am testifying here both as the past president of the association and as a student of children in many parts of the world over the last 36 years, when I began my study of children in the Samoan Islands in 1925.

I am testifying not so much in support of this bill, because it seems to be quite inconceivable that it will not be passed, but in terms of the inclusiveness of the bill, the importance of the particular problem on which our attention has been focused: that of mental retardation, but also the importance of basing this deeply enough so that, while

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we are attacking the problem of mental retardation, we will be establishing the basis for the health of all children, because there are a variety of other problems besides mental retardation that also affect them, of course.

And the importance of the behavioral sciences-anthropology, psychology, sociology, child development-in any approach to this problem.

However we study it, whether we look at the record of World War II and the studies of Ginsberg that show the very large number of men who were rejected from the U.S. Army-and it was impossible to tell in many cases whether we were dealing with the type of mental defect that was organic in nature or whether it was a result of their social, cultural, and educational opportunities or whether we look at case histories of particular children in different parts of the world, we are struck with the fact that mental retardation, like the wider problem of all human development, is a multiple process, and it cannot be approached narrowly only through the medical sciences without the help of those who can specialize in social, cultural and educational considerations.

For instance, in World War II the incidence of those who were refused in the Army because of mental deficiency varied sharply by States.

It varied sometimes between the north and the south of the same State, and it was conspicuous in those areas where we have backwaters of population that have not been exposed to the medical, social, and educational care, either because of ethnic differences or because of rural isolation.

It was also conspicuous in this World War II period that it was possible to reclaim and rehabilitate three out of four of those men who had been classified as unable to function in the Army when they were given special care later in life, so that I want to emphasize also that it is our hope that this Institute of Child Health and Human Development will include the entire lifespan.

Although the principal focus will be on children, because it is in children, in childhood, that the groundwork is laid down for many difficulties, nevertheless, there are also difficulties that arise later.

There are difficulties that do not appear until much later in life. And it was emphasized at the conferences that have been held on this bill that we do not have basic data on normal children. We have an increasing amount of data on sick children, on mentally retarded children, on psychotic children, but we have nothing to base it on.

We do not have complete studies that will tell us what we can really expect from our children, what the range of growth is. I would like to draw the attention of the committee to the sort of thing that happens, as a result.

I watched recently a child who has had to be committed to a residential home for children, who was referred to a clinic as mentally deficient. It turned out that this particular child had an IQ of 140. But she had learned to read at 4 and no one had discovered it. She was so out of step with her educational environment that she had been driven into a maladjusted position that it now may take several years to correct, or may not be corrected.

Or we have the instance of a child that was brought to a diagnostician in England, an 11-month-old baby that could not sit up, head

down on one side, eyes did not focus, looked like a hopelessly deficient child. The diagnostician was one of the best in the world, but he thought the child was deficient, hopelessly deficient, and, as he turned away to his desk to write a piece of paper that would have made that child an institutional case for life, he looked back and suddenly saw on the face of this child an enormous, beaming, completely sensible smile. He looked around at the source of the smile and the child's father was standing in the doorway.

This was a child who had been separated from its parents from birth because the mother had tuberculosis. The father was poor. He had three other children. Once a month he went to visit his tiny new baby in an institution, and that once-a-month contact was enough for that child, otherwise institutionalized and condemned to practically no development at all, to build up a relationship to the father.

So the diagnostician said: "You can take that baby home," and in 3 or 4 months the child was walking and developing perhaps not quite normally because there had been a long period of deprivation, but it was a bright, ordinary child.

This is the sort of thing that is happening all over our country because we have inadequate methods of diagnosing difficulties in small children or in older children, and we have inadequate ways of taking into account all the kinds of material that we have.

If we can build into the ground plan for the National Institute of Child Health and Human Development and into the National Institute of General Medical Sciences, which will be supporting it in its general behavioral research, a wide enough spectrum so that in the case of every child we bring to bear not only all we know of physiology, of maternal and child health in the narrower sense, but also what we know about other countries, about children who have been brought up under other conditions, about the effect of living in special parts of this country, about the deprivations that arise from particular types of early education, then we will be able to build the kind of health in this country that ought to salvage something like four or five out of six of the individuals who are now suffering from mental retardation alone, and we could salvage many others.

I would like to read you, Mr. Chairman, also, a telegram from Dr. Sherwood Washburn, the present president of the American Anthropological Association, and who brings a slightly different point of view than my own because he is a physical anthropologist who has specialized in the growth and in development and in the comparative study of animal behavior as it bears also on human behavior. Dr. Washburn writes:

The health of children offers many special problems, and there is much to be gained by the establishment of an Institute of Child Health. Anthropologists have much to offer in such an Institute by the comparative study of the problems of child health in various parts of the world. A broad approach, including genetics, environmental and social factors, is necessary. An anthropologist would be useful in bringing together the different kinds of evidence.

In the discussions that have preceded the development of this bill and the plan for this Institute, one thing struck me, also, that I think is worth considering, and that is, as we build up studies of children, adolescents, mothers, and old age, at present there is one part of the American population that is being conspicuously neglected, and this is mature men. They have no specialty, devoted to their

care.