Filmed Interviews As A Retrospectoscope: Re-Discovering A 'Lost' Disease

Ian Franklin, Department of Medicine University of Glasgow and Jim Devine Hunterian Museum and Art Gallery, Scotland

Abstract

In the Virtual Museum of Transfusion Medicine (VMTM) the story of how Rhesus haemolytic disease came to be prevented is being developed on the Web site.  This process has concentrated on interviews with relevant figures.  The development of affordable, good –quality and user-friendly digital video capture hardware and video-editing software has opened up enormous possibilities for museums and other cultural scientific, and medical heritage organisations to create archival quality digital video resources, recording key people, places and events for current and future generations of scholars and practitioners, and to inform and educate an ever widening audience of the public through electronic delivery of the digitized resources.  This paper will examine the rationale of using the digital video medium for interview collection, the interview approach used by the VMTM, and the hardware and software issues involved.

Keywords:  Rhesus haemolytic disease, digital video capture hardware, digitized resources

The Wellcome Library Of The History Of Medicine

In June 2003, a witness seminar was hosted in London by the Wellcome Library of the History of Medicine.  This covered the history of Rhesus haemolytic disease and brought together many of the surviving important figures in the developments of the treatment.  This will lead to a publication in the near future with transcripts of the discussion and photographs of the relevant figures. 

The Virtual Museum Of Transfusion Medicine

The VMTM will provide a complementary archive resource to that in the written document from the witness seminar.  In an attempt to capture the views, personalities and voices of important figures, interviews were carried out and recorded for the museum.  These interviews included one carried out in Liverpool in late summer 2003 with Professor Ronald Finn who was credited by the Liverpool team as having the original idea.  Professor Finn worked on the background research prior to the development of the clinical trials which showed that anti-RhD was an effective treatment to prevent Rhesus haemolytic disease.  Unfortunately, Professor Finn became unwell and died in May 2004.  However this emphasised the importance of the VMTM's encountering the individuals who made such great contributions to patient care many years ago. 

In addition to the interview with Professor Finn, an interview was conducted with the Senior Obstetrician involved in the management of pregnant women and babies involved in Rhesus haemolytic disease.  In order to extend the scope of the individual's experience, three previous donors of anti-RhD to the Scottish National Blood Transfusion Service (SNBTS) anti-D programme were also interviewed. 

Rhesus Haemolytic Disease: Background

Rhesus haemolytic disease was identified in the early part of the 20^th century as the common cause of a range of clinical syndromes in still-born babies and severely anaemic and jaundiced newborn babies.  The tendency for subsequent pregnancies to be affected led to concerns that this was a form of inherited disease although this proved not to be the case.  Discovery of the Rhesus blood group system enabled clarification of the problem.  Some 15% of the women in Western Europe are Rhesus negative (RhD -).  There is a corresponding 85% chance that their partner will be RhD +.  Therefore children of these families will have a chance of being themselves RhD + inherited from the father.  During the first pregnancy, usually no untoward problems occur, and healthy babies are the usual outcome.  However during delivery it is common for blood from the fetus to cross into the mother, and there the RhD + positive blood can stimulate an immune reaction.  This causes the mother to generate antibodies to the RhD on the red cells of babies in future pregnancies.  During the second and subsequent pregnancy, if the baby is RhD +, tiny quantities of blood cross the placenta, stimulate a strong antibody response, and anti-RhD antibodies cross from the mother into the baby, causing anaemia.  In the most severe cases, anaemia is life threatening during intra uterine development and the baby is born stillborn, with clinical evidence of heart failure secondary to anaemia in a condition known as erythroblastosis fetalis. 

Prior to the Second World War this did cause significant problems in a number of women, but the death rates were masked by the large numbers of deaths in infancy and early childhood due to acute infections.  With the development of penicillin and a range of other antibiotics in the 1940's and 50's, the management of Rhesus haemolytic disease, as it had become known, became more and more important and was a much more significant cause of perinatal death than in the pre antibiotic era.   It was not uncommon to see the tragic situation of a woman having repeated still births or babies born that would subsequently die of anaemia or jaundice.

Attempts to manage this problem began soon after the Second World War, in the late 1940's and early 1950's.  Simple transfusions did not seem to be sufficient: often the babies would become even more unwell and go into endstage heart failure and die.  It therefore became apparent that a form of exchange transfusion would be required.  These began under most unpromising circumstances with poor equipment and minimal ability to manage resuscitation of very sick babies.  However some survived, and this encouraged early pioneers to further refine the process so that eventually exchange transfusion became, by the 1960's, standard treatment in these cases.  But mortality was still high, and in addition, neurological toxicity due to high bilirubin levels (jaundice) provided further morbidity and death.  Therefore although exchange transfusion could help, it did so in only a minority of cases, and a preventive strategy was required.

This emerged in the late 1960's following a number of clinical trials in which it was shown, following an idea credited to Finn, that injection of anti-D into the mother could actually prevent the development of antibodies.  Even to this day it is not entirely clear exactly how the antibody treatment works, but its efficacy is extremely high and it now has a very safe record.  In brief, plasma is collected from donors who have high levels of anti-RhD in their blood.  In the beginning, many of these were previously pregnant women who had themselves been involved in RhD pregnancies.  Many of these women were highly motivated because they had lost babies themselves to this awful condition.  However, as the treatment began to become effective, the number of women with anti-RhD diminished, and it was necessary to artificially create anti-D in male donors by immunising RhD negative men with RhD positive red cells. 

Systems for collecting anti-RhD are now well established throughout the developed nations of the world.  When the plasma is collected, the antibody is isolated and concentrated, and prepared in therapeutic size dosage.  These doses are then given to RhD negative women at critical points in their pregnancies.  This may be if they have bleeding during the pregnancy, or vigorous physical manipulations, e.g. to change the position of the baby, or amniocentesis or chorionic villous sampling.  Further doses are given at the time of delivery and, if necessary, after the delivery as well.  In some medical systems preventative anti-RhD is given twice during pregnancy, even in the absence of any concerns about precipitating events.

This preventative and treatment strategy has led to the virtual elimination of Rhesus disease in newborns in developed health economies.  Accordingly it is important to sometimes remind the public, and indeed professionals, that this is indeed a serious condition and that the preventative treatment is important and necessary. 

Interview With Previous Donors

Three female donors were interviewed, women who had also, themselves, had personal experience with children with Rhesus haemolytic disease.  One of the donors was prepared to speak, most eloquently, about the loss of two of her babies due to this disorder.  They explain how pleased they were to help with the donor programme, and indeed, when due to concerns about variant CJD (Creutzfeldt-Jakob Disease) in the UK blood donor population they were asked to cease donating towards the end of the 1990s, these donors were most upset about having to cease supporting the treatment programme.

Focused Versus Open Format Interviews

Initially, open format interviews were held where a general discussion with the interviewees  ascertained their involvement in the Rhesus disease process and their personal experiences.  This led to a discursive interview which, although containing much of interest, was difficult to manage within the Web site format.  Although it is intended to provide full interviews as an archive feature within the VMTM Web site, immediate downloads need to be short and sharp to ensure that the experience of accessing the site is seamless and rapid.  Accordingly, from 2005 onwards, a combination of open format interviews and structured interviews is planned.  The expectation is that the open format will enable considerable discussion around important issues in relation to transfusion medicine, science, the treatment of patients with blood diseases, and blood related services.  The structured interview will provide the opportunity to have important figures give short directed statements that can be placed on the Web site for mainly illustrative purposes.  At our MW2005 workshop we will show examples of the open format interviews and also to show examples of the structured interview, and then to compare and contrast the outcomes and see how these might be used to ensure continued interest on the Web site. 

Conclusion

It order to capture the experiences of important figures in the development of treatment for Rhesus haemolytic disease, interviews have been carried out with relevant figures in the field. These have already shown their worth in capturing the thoughts, impressions and images of key figures involved in events many, many years ago.  The success of the treatment programme means that Rhesus haemolytic disease is now an almost forgotten condition, and along with many of the common childhood illnesses, it is important to remind physicians, patients and care-givers that without the important vigilance and application of preventative measures, these conditions could return to cause significant morbidity and mortality.  Therefore the VMTM Web site will act not only as a memorial to the essential work carried out by the major players in the field but also as a reminder to the present day of the importance of continuing preventative work.

Cite as:

Franklin, I. and J. Devine, Filmed Interviews As A Retrospectoscope: Re-Discovering A 'Lost' Disease, in J. Trant and D. Bearman (eds.). Museums and the Web 2005: Proceedings, Toronto: Archives & Museum Informatics, published March 31, 2005 at http://www.archimuse.com/mw2005/papers/franklin/franklin.html