Waney Squier - Transcript Summary

Waney SquierConsultant Paediatric Neuropathologist at the John Radcliffe Hospital, Oxford

Interview location: John Radcliffe Hospital, Oxford
Interview date: 10th October, 2007

Key themes: Alder Hey, Autopsy, Children, Motivation, Legislation and Regulation


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Section 1

  • Starts with reflections on the long-term effects of Alder Hey, and the changing practices regarding autopsy.  Highlights the value of detailed autopsy reports:  “the information we get is absolutely invaluable.” Argues that even centuries-old autopsy literature still has a value.  “Good, old fashioned, observational pathology has such an enormous amount to offer.” 
  • This remains the case, despite the sophistication of modern scanning technology. “MRI gives us so much information, but it's actually seeing the structure with the naked eye and then looking at it under the microscope that really teaches us so much.”
  • She explains her fascination with shaken baby syndrome and gives the background to the first paper that established the original diagnosis.  Then looks at arguments for and against it being  an accurate description of what actually happens. “It was Jennian Geddes who first... started thinking of other possible explanations.”
  • Her own searches through the literature also raised questions about the validity of shaken baby syndrome, which is why she is very interested in looking at the structure and development of the dura in very young babies. “I think there are a whole lot of different mechanisms that might cause spontaneous (or not spontaneous) bleeding into the dura in babies in this little age group -- three or four months of age -- that do not necessarily imply that they've had trauma, and certainly not necessarily inflicted trauma.”
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Section 2

  • She explains how she became involved in the debate, and the huge importance of the work of Jennian Geddes.  She is now part of an international network of professionals who share concerns and information about the syndrome.
  • This work has underlined for her the importance of always questioning the methodology used to provide evidence.  “So much of what we believe we're told and we accept... We don't ask enough questions.”
  • Talks about the shattering impact of this kind of diagnosis on both parents and  professionals.  Gives the example of a BBC television interview in which she acknowledged that she now believed the basis for an earlier diagnosis was flawed. “I was on camera; I was absolutely devastated.”
  • Relates some other cases where miscarriages of justice have destroyed families.  Explains why these cases are so specially difficult: “The amount of information we have is often insufficient to be absolutely certain of a diagnosis of non-accidental injury.”  And, she points out, “That isn’t helpful to lawyers.”
  • Explains what motivates her. “What’s made me really passionate is what’s at stake for families.”
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Section 3

  • Talks about how the subject tends to polarise medical experts. “We get into a very difficult, adversarial situation, with the hawks and the doves.”  Regrets the confrontational nature of court proceedings, which is at odds with the complexity of the issues. 
  • Describes how a paper of hers was rejected because it drew on old literature.  “It’s not as if it’s old technology that we know was faulty or has been superseded.  This is basic, old, observational pathology: just simply people describing large numbers of cases, more than we can study today.  That doesn’t change.”
  • Emphasises the importance of improving the evidence base by publishing as much as possible, but discusses the barriers to doing so -- most importantly the difficulty of challenging orthodoxy.
  • Discusses how incredibly important fine detail is in these cases and gives examples.  A definitive diagnosis is a question of putting together disparate bits of a jigsaw which includes scans and other evidence.  Describes an alternative theory she has developed about babies choking during their feeds.  Explains why, as an essentially non-confrontational person, she is now willing to stand up and “be as controversial as it takes, if I’ve got the evidence”.
  • Describes what is being discovered about the developmental stages of baby brains. Talks about her collaboration with Irene Scheimberg who is looking at events before birth, and how that links with her own interest in haemorrhages due to the birth process itself.
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Section 4

  • Turns to the issue of cerebral palsy, which is another of her special interests.  Describes how she is looking particularly at how and when brain damage occurs. 
  • Describes how developments in MRI scanning is allowing them to learn much more about the development of the baby brain in utero.  “What we're trying to do is identify patterns of injury that we can see on scans that are associated with specific genetic problems.”
  • Talks about greater understanding of poly microgyria and mentions international collaborative study. These kinds of studies involve geneticists and MRI specialists; she gives  examples of how this collaborative work can help families.  This serves to underline the importance of “being able to return to cases because we've got them in the archive”.
  • Leads into the issue of building tissue and organ banks.  She describes the importance of a good working relationship with the coroner who must approve of her approaching families for consent.
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Section 5

  • Talks about how her experience during the Alder Hey crisis -- when she had to face angry, grieving parents and managed to explain the value of retaining organs -- has given her confidence in talking with families.  Gives a detailed example involving the death of a three-year-old girl.
  • Brief discussion about coroner’s remit and tensions about who pays for taking the investigation further.  Returns to the issue of consent to organ retention in coroner’s cases.  Explains that she’s relatively unusual in being willing to speak to families, and that’s why the recent development of bereavement teams in hospitals is important. “That's actually been a tremendously successful innovation since Alder Hey.”  Describes role and skills of bereavement teams at John Radcliffe.
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Section 6

  • Talks of family life.  Hers was the first generation to go to university.  Her elder brother persuaded her to take up medicine.  Torn between paediatrics and pathology, she tried the former: “I found that I'm better off not making rapid decisions and not having to deal with the sort of emotional environment you get with sick and dying children.”
  • Much of the appeal of pathology lies in the detective work: “I realised...that I liked asking questions; I wanted to know what the mechanisms were, why things happen.”  This aspect hasn’t changed: “Every day I'm being sent things to look at which we don’t understand... It's always fascinating.”
  • Discusses why she chose to specialise in neuropathology – and paediatric neuropathology in particular: “Much of adult neuropathology has to do with dementia and Alzheimer's disease and strokes and things that really are on the way downhill, whereas in development every week the brain is different.” 
  • Emphasises the huge variety and stimulation of her work.  Talks about the difficulties of balancing motherhood and career. But managing to keep her professional life going “has been immensely rewarding”.
  • She really wanted to have children and a career, and makes the point that “it’s much easier to be flexible about your time if you’re in pathology.”
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Section 7

  • Describes her own experience of being subjected to character assassination; explains that one lawyer’s tactic was “to get the jury to believe that whatever I said was not to be taken seriously”.
  • Relates a very interesting case in which she feels the judge was unhappy with this adversarial approach and the jury’s decision. 
  • She highlights how the adversarial nature of court cases makes it “very easy to be pushed from the middle ground into taking a stance.  And one has to guard against that the whole time.”  Also points out that the jury’s impressions can be as important as the content of the debate. “One has to realise that one's playing to lawyers and playing to juries:  this isn't pure science; this is theatre as well.”
  • Another issue is the fact that what’s at question is “intensely complicated, detailed pathology”, which is hard enough for the professionals to understand, but which “has to be translated into ‘did this person do it or not?’ ”
  • Despite the frustrations of court, it can be stimulating work and has emphasised the importance of accuracy.  “You can't write things that are open to misinterpretation, so it's made me approach my diagnosis in a very different way.”  



Section 8

  • A strong motivational force is “working for families”, but her primary motivation is the endless search for answers to questions.  “Every case has something new to offer.  So that's what keeps me stimulated, and keeps me going.” One regret is that she hasn’t got round to writing up more of her ideas and observations. 
  • For her the “high points” are the times when parents express appreciation of her role as a pathologist in what are harrowing circumstances.
  • When she entered the field of paediatric neuropathology hardly any work had been done on baby brains.  The two people who have been an “inspiration” to her are Jeanne-Claudie Larroche in Paris, and Jean Keeling in Oxford.
  • Describes how she “switches off” after busy day through enjoyment of music and fine wine.
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