A century ago Dr A Hill-Griffith based in Manchester, England reported on two families’ experience of glioma of the Retina, which is today referred to as Retinoblastoma. The doctor’s contribution to ophthalmology has only been picked up ten times since; the latest occasion was in 2012, after a fifty-two-year gap, by a team of Indian researchers. Hill-Griffith discussed his work with three generations of the Smith family and Mrs Jones and children which made him consider whether some tumours of the eye where heritable. In a decade he had treated for Rb, the children of two mothers who had themselves received treatment for Rb in the 1870s/80s. Hill Griffith signed off his report ‘These hereditary cases seem to show an abnormal tendency to affect several members of the family, and also to implicate both eyes.’
Unfortunately, for the modern researcher, he reported on families surnamed Smith and Jones. Assuming that the doctor didn’t follow a modern procedure of anonymising with pseudonyms his patient case studies are still difficult to trace in the public record. Even with a high level of indicators extracted from his report, it proofs difficult to match the families against other state records like the census and birth, marriages and deaths with any degree of reliability. Some may wonder why such an intrusion might be useful.
There is potential to reconstruct Rb family-lineages. In the small community of contemporary Rb, there are families into third, fourth and fifth generations where the gene has had an impact. Technically the capacity exists to genealogical reconstruct these Rb family lineages back further generations as well as trace forward Rb identified patient case studies from the past. Such an activity could produce a descent and ancestry lineage whose death records could be investigated for further information for cause, or further historical hospital records could be sought for evidence of Rb up and down the generations.
A. Hill Griffith’s case studies are not the only data source available for this as he had referenced a three-generation lineage where only the grand-father and grandchildren had shown symptoms and been treated with the daughter-mother being skipped. Historical Rb patients can also be identified through the Historic Hospital Admissions Records Project. The earliest likely patient recorded being Edward Cann, Clapton, Hackney who succumbed to tumours in both eyes having been discharged from Great Ormond Street Nov 1860. As did William Samways in 1876 aged two who was examined but deemed unlikely to benefit from treatment. In contrast, Hannah Blackwell who was ‘cured’ in 1882, went on to raise many children and migrated to Canada with them. It is worth noting that by the 1920s the anonymisation of patient case studies was standard, so there is only a small number of decades where this is possible.
A lengthy research paper by C. Devereux Marshall from 1897 is a rich resource for case studies. It also captures the tensions and developing processes of the medical profession alongside the dilemmas and forces that Rb brought upon the family.
The question as to whether glioma is likely to appear in more than one member of the same family is of the utmost importance to the anxious parents…
Devereux Marshall referred back to his immediate predecessors, Lawford and Collin’s, who had found no family link, while during the 1890-97 period, some family clusters had begun to emerge. This provides context to Hill-Griffith’s report two decades later and the battle to be in better relationships and ongoing contact with the families as good practice.
The difficulties of doing this were two-fold, Ada Lydia Wright’s family were functionally illiterate and had taken some of their children to different London hospitals with four of the six, potentially, one, likely, one and definitely, two, being affected by Rb. Neither parent showed or reported a history of Rb themselves. Hill Griffith in 1917 had noted that he and colleagues most often saw mothers’ and could spot artificial eyes he and his colleagues only infrequently encountered fathers, as their work left them unable to attend the hospital, so anecdotal correlation to the father’s Rb status was unlikely. Dr Berrisford who appears to have worked in different cities and nations and been a person of note who reported on the case where a generation was skipped only impacting the grandfather and grandchildren.
‘Undoubtedly the correct thing to do would be to examine at intervals these children’.
Which was not so simple a task, Devereux Marshall’s report notes the number of children and families where contact had been lost over the seven-year period. The mother of case 84, Sidney Everist, had only brought her child back in after two and half years after the first enucleation, in response to a letter, reporting no complications but new tumours were quickly discovered in the margins of the remaining eye.
These old records regarding Glioma of the Retina, Rb are a rich resource of material, not least they tell us about the development of the understanding of the condition within the context of the history of medicine. The records also open up the complex task of identifying potential family lines and family contexts that could throw further light on what it meant to be a family affected by Rb in the past. The level of work needed to do this shouldn’t be underestimated. It is possible to pick up Harry Chattaway in Deptford, London in 1901 aged ten recorded as having lost an eye with his elderly father a warehouse packer. Harry in 1911 was a draughtsman, a person who makes detailed technical plans or drawings, specialising in railway stoves. Sidney Everist, who in all honesty ought to be simple to discover presents a quandary as he was not recorded as having an impairment and the potential of his death in service with the Royal Navy in 1917 is challenging following his medical history. It is possible to identify that Chattaway had two aunts who had died aged two and four in mid-Victorian, Wolverhampton, which is a clear red flag.
The potential studies and queries are diverse, for example, was Harry’s educational, economic rise as measured against his father’s work history affected by a charity based upon the eye loss. Alternatively, if it proves possible to map enough of the case study patients against government records an exercise of geographical mapping emerges. Such a project would identify the territorial reach of the hospitals which informs us about the percolation of knowledge and awareness amongst the medical profession and the ability of families from different socio-economic situations to participate in an ongoing medical process. There could well be some surprises hidden in this data not least if current Rb lineage families become associated to one of the case study patients.
Let’s finish though with what cannot be done the numbers are simply too small to do any statistical work, which is the ongoing complexity of the Rb patient cohorts. So despite some oddities buried within these old records, like skipped generations, the data wouldn’t support any demographic level assessment.
 GLIOMA RETINAE (WITH REPORT OF A CASE) BY DR. W. J. KEYS, VICTORIA, B.C;. Clinical and Pathological Report of Bilateral Glioma Retinae. By R.FOSTER MOORE, F.R.C.S., AND R.S.SCOTT, F.R.C.S.,
 C. Devereux Marshall, ‘Notes of Glioma Retinae’, Ophthalmic Hospital Reports, (The Royal London; London, England, 1897), p.454
 A. Hill Griffith, ‘Hereditary glioma of the retina’, The British Journal of Ophthalmology, 1, no.9 (1917), pp.529.