Prof. Bengt Hagberg (1923–2015)

Prof. Bengt Hagberg (1923–2015)

Bengt Hagberg was regarded as “the father of pediatric neurology” in Sweden and one of the pioneers of child neurology in Europe. He was honored in 2005 by the newly founded European Pediatric Neurology Society when he—together with J. Aicardi, V. Dubowitz, Y. Fukuyama, N. Gordon, G. Lyon, and F. Schulte—was elected as its very first honorary member. He received many more honorary titles from the United States, Great Britain, Japan, the Nordic countries, and Germany. He became an honorary member of our society in 2000, and was awarded the Jacob Henle medal in 1987—the, highest distinction of the medical faculty of the University of Göttingen. The University of Göttingen honored his major contributions to the development of pediatric neurology in Europe and Germany. In 1975, Bengt Hagberg and Folker Hanefeld had started a unique cooperation between Gothenburg and Berlin, then Göttingen with a regular exchange between the departments concerning clinical cases and scientific projects.

Bengt Hagberg began his pediatric training in Uppsala in 1950. He became assistant professor of pediatrics in 1956 and was appointed lecturer in pediatrics in 1960. In 1967, as an associated professor in pediatric neurology, he worked at different faculties throughout Sweden. In 1969, he became the first professor in pediatric neurology in the Nordic countries, and in 1971, he was appointed as professor of pediatrics at Goteborg University where he continued his work further. After becoming an emeritus professor in 1990, he continued his clinical and scientific work in Gothenburg.

Whoever met Bengt Hagberg was amazed by his enormous clinical experience and his ability to identify the key features of a disease as important cues for differential diagnosis. It was marvelous to observe him when he investigated the children. While mostly crawling on the same level as the child, that is, on the ground, he got excellent contact with the children and their parents, a perfect basis for a comprehensive neurological examination. He really loved his clinical job, and it was in the 1980s when—as the most experienced child neurologist in Europe–he stated “the most exciting aspect of pediatric neurology is that every month I see a patient with a disease I had never seen before.” This enthusiasm to detect principles of pediatric neurology in every single patient made him catch and store all the signs and little pieces of a case so that he could come back to the patient when he had a similar case. And this is what characterized him finally as a superior clinical researcher. He had a black box in which he stored all children with an unknown diagnosis, and once per year, he went through the papers in his box. By that he re-discovered the Rett syndrome, seeing his first patient in 1960. In 1980, he presented altogether 16 patients with—what he called at that time due to the name of his first case—“Vesslan disease” at the meeting of the European Federation of Child Neurology in Manchester. J. Aicardi, K. Dias, and O. Ramos also informed that they had seen similar patients, and a paper was submitted to Annals of Neurology. At that time, he learned that A. Rett, in Vienna, had already described similar patients in a German journal in 1966, but because of a biomarker which proved invalid, the new syndrome had not been accepted by the scientific community. Shortly before printing, Bengt changed the title, and the name of A. Rett was inserted. In addition, because of his little black box, he not only was able to re-discover Rett syndrome but also, at the same time, he could give already a follow-up of the female patients up to their 40s, having seen them first as toddlers or at school age.

Bengt together with his wife, Gudrun, established epidemiology of the cerebral palsies and contributed greatly to their systematic description and classification. For decades, he carefully described the changing pattern of cerebral palsy in Western Sweden, and he could parallel it to a change of care and survival, especially for the very preterm babies. Bengt and Gudrun also were founding members of the Surveillance of Cerebral Palsy in Europe.

In further studies, he touched upon nearly all important topics of child neurology dealing with lysosomal diseases (together with Prof. Svennerholm, professor of neurochemistry, and Prof. Sourander, professor of neuropathology at Gothenburg University), with Nieman Pick, and metachromatic leukodystrophy, with Krabbe disease. Furthermore, he conducted epidemiological studies on hydrocephalus, ataxia, peripheral neuropathies, Rett syndrome, etc. At least, he was the first person in Europe who dealt with what is nowadays called attention deficit/hyperactivity disorder.

At the end, he had published more than 400 peer-reviewed articles in all important journals and textbooks of pediatrics and pediatric neurology.

He helped to establish a re-habilitation system in Sweden in which all handicapped children of a greater area got access to diagnosis and treatment irrespective of their life in town or rural area. As a German, one can only be jealous when looking at the impact and consistency of this system, promoted by Bengt Hagberg.

At a time when neither “peroxisomal disease” nor CDG syndrome was described, he sat in front of a map of the human cell and stated “now that we have learnt to know of lysosomal diseases and patients with disturbance in the mitochondria, these cell organelles [pointing to peroxisomes and Golgi apparatus] must hide further diseases”. A year later, the first peroxisomal entity was described.

Bengt had many facets. He was a very systematic researcher as well as a superb clinician, and together with his nonegoistic attitude, he was the ideal child neurologist one can think of. He was a great teacher, not only formally teaching the principles of pediatric neurology but also with the right attitude to look after children and parents. He was a man who loved his family (5 children, 14 grandchildren, and 14 great-grandchildren), and last but not least, in his 20s, he was one of the fastest 100-m runners in Sweden, winning 100-m championship among high school students. One of his best scores, in my memory, was 10.8 seconds.

Bengt was a friend to children and their parents, to all the numerous students and pediatricians who visited his department to be taught pediatric neurology, and to all the coworkers of his scientific life.

The European child neurology community has lost a great friend and personality.