Council on Children with Disabilities:
Arnold J. Capute Award

2006 Capute Award Recipient

Mark L. Batshaw, MD, FAAP

Dr. Batshaw’s remarks on receiving the Arnold J. Capute Award:

I am honored to have been chosen for this prestigious award named for an important mentor, Arnold Capute. He is most known as a master clinician, educator and mentor, which he of course was. Arnold, however, also made seminal clinical research contributions in the areas of cerebral palsy and early language development and authored a major infant screening tool that now carries his name.

As a translational scientist my relationship with Arnold was not always easy. When I started to do research on inborn errors he told me I had left the field of developmental disabilities. When I took a sabbatical to learn neurochemistry he congratulated me on finally seeing the light. It was, however, his support I remember most. When I was having a difficult time with my research mentor, he encouraged me not to give up.

Arnold was a father figure to all of his fellows, as well as to our field. He was loving but demanding; he had a clear vision of where we and the field should go. It has been fitting that the first five Capute awardees were peers of Arnold’s while last year began a trend toward recognizing Arnold’s trainees who have made contributions to the field of children with disabilities initially with Pat Accardo and now with me.

My own connection with developmental disabilities began before my birth. My parents married late in life and waited until it was clear that the Allies would be victorious and it was safe to conceive a Jewish child. So I was born when my mother was over 40, an only child, and one she feared would have Down syndrome. Although they still thought there were 48 chromosomes and had no idea that trisomy 21 caused Down syndrome, the association with advanced maternal age was well known in 1945. My mother, a medical social worker, was keenly aware of this and told me later that upon my birth she carefully looked for a simian crease and the slant of my eyes. At age two she worried that I was not yet talking and that I could not sit still. In fact, she said that I walked from Montreal to Philadelphia. You see we were traveling by train and apparently I did not sit down for the entire 12 hr. trip.

Elementary school was a disaster for me. I could not read until 3 rd grade, was very clumsy, and painfully shy and inept in social situations. I hated recess because no one picked me for games, and when we played baseball, I did not even wait to be chosen; I just walked out to right field.

This was before stimulant medications were used, and special education was available only for the most severely disabled. For me special education meant detention for talking or losing my homework, and being placed in the hall so that I could see the teacher but would not disrupt the class. I barely passed 4 th grade. What saved me was my mother. She became my tutor, teaching me to read and to learn my math facts. She would play board games with me to break up the tedium of work and read to me at night so I could learn the beauty of words and the meaning they carried. And she would tell me that things would get better. I, of course, never believed her.

I arrived at becoming a developmental pediatrician through life experiences. After medical school at the University of Chicago Karen and I moved back to my native Canada and the Hospital for Sick Children in Toronto for my pediatric residency. Shortly after our arrival she became pregnant with our first child. Carrier screening was just being offered for Tay Sachs disease and we were tested. The results came back the morning Karen started having contractions -we were both carriers. On top of this as labor progressed, there was a major fetal heart deceleration and an emergency C-section was performed. As I sat in the waiting room, I made one of those promises you do in such a situation. If my child was all right I would dedicate myself to children with disabilities. Elissa was a Tay Sachs carrier and her Apgar was 8. I became a developmental pediatrician, and she is now a special education teacher.

On my arrival in Baltimore to do my developmental pediatric fellowship at the Kennedy Institute on a Canadian grant, Arnold greeted me with his wry sense of humor- “a freebee”, he said, “I am sure we will get what we paid for”. Five months later I was doing my rotation on the pediatric neurology ward when a 13 year old girl, Linda, was admitted to our service for pneuoencephalography because of suspected Moya Moya syndrome. She had had multiple episodes that looked like strokes. She would become encephalopathic for a few days and, over time, she developed progressive cognitive deficits. In taking the history I noted that these episodes started in evenings after a heavy meat meal. I decided to get urine amino acids, which were the state of the art test for metabolic screening at the time. Glutamine was elevated and because I didn’t know what that meant, I went to the library and looked it up in the Metabolic Basis of Inherited Diseases, the classic text on metabolic diseases. It sent me to urea cycle disorders, a rare group of disorders that had only been identified 10 years before.

I wanted to obtain an ammonia level to see if it was elevated as a marker for these disorders, but this was only being done by one investigator in Hopkins. This individual, Dr. Saul Brusilow, was studying ammonia in the sweat of children with cystic fibrosis. I asked him if he would measure the ammonia, and in the Hopkins tradition, he said, “do it yourself”. So, I went into his lab, learned the technique and ran the test. The ammonia was elevated, leading us to eventually identify her as having a urea cycle disorder. A few weeks later there was a lecture being given by an adult nephrologist, Dr. MacKenzie Walser, on the use of new compounds he had developed called ketoacids. These were nitrogen free analogues of amino acids. I saw them as a means of leaching ammonia out of Linda’s system and asked if I could try this. We did and it worked. My first paper turned out to be a lead article in the New England Journal of Medicine, and I was hooked on research.

My entire academic career has been based on developing and testing novel therapies for rare metabolic disorders that cause developmental disabilities. There have been successes and there have been failures. I have tried to follow in Arnold’s footsteps by being a mentor to developmental pediatric fellows and junior faculty members who have worked with me. My successes have also been theirs, and a number of them are now leaders in the field of disabilities.

As you know Arnold’s passion was to have Boards in Neurodevelopmental Pediatrics. He worked on this for at least 25 years before it came to fruition. The first application to the ABP was rejected and one of the reasons given was that there was no discrete area of research related to developmental disabilities. As the designated “basic researcher” I was assigned by Arnold to do something about this. This was in the late 1980’s when I had helped to found an NIH funded Mental Retardation and Developmental Disabilities Research Center at Kennedy. I had the idea of developing a journal that would combine the forces of the investigations done by the 14 Mental Retardation and Developmental Disabilities Research Centers throughout the country with the research done by members of the Society for Developmental Pediatrics. This became the journal Mental Retardation and Developmental Disabilities Research Reviews which I edited for a number of years and which is now ably run by Marilee Allen. It has become a well cited and influential outlet for reviews of both clinical and translational research performed in our specialty.

Dr. Palmer kindly noted my textbook. I actually developed it out of a course I taught in the School of Education at Hopkins titled “medical and physical aspects of the handicapped child”. There was not an adequate textbook available, so I developed my own slides and readings for the course. After the first year, my students suggested that I write them up, and that became Children with Disabilities. I want to acknowledge my co-editors for the 6 th ed., Nancy Roizen and Lou Pellegrino.

This book has become a family affair. My daughter Elissa authored the Special Education chapter in the past two editions, our older son Michael, a social worker and my wife Karen, also a social worker, wrote the chapter on Caring and Coping, and our son Drew, who shares with me the “gift” of ADHD, has written an autobiographical letter for each of the past 4 editions. It has been his letter that have been most helpful to families as they watched him move from his essay entitled at age 12 “Why me”, to his writing of his undergraduate time at Vassar, his MBA at USC with an MBA and his recent marriage to Amy.

Finally, I want to recognize the children and their families I have had the honor to serve. Some are adults now who still come to see me once a year to just check in. I have been in the wonderful position of being able to both accept significant academic administrative responsibilities while still practicing neurodevelopmental pediatrics. It defines who I am and keeps me grounded as to what is important, the health of our children with disabilities.

Thank you again for this honor. Of course Arnold would say “You can’t make a silk purse out of a sow’s ear”. But with me he tried.

Congratulations Dr. Batshaw!

Last Updated March 7, 2007