Irene Scheimberg - Full Transcript

Irene ScheimbergConsultant Paediatric and Perinatal Pathologist,
London Hospital

Interview location: Her home and her office, London.
Interview date: 28th July and 2nd August, 2007


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SECTION 1

They just took the first boat out and they ended up in ArgentinaIS:  My great grandfather (my father's grandfather) was a carpenter in Russia, and he was a free thinker.  He was Jewish, but he was an atheist -- so Jewish ethnically-speaking, but not religious.  

My grandmother was his eldest daughter, and she was very clever.  But there was a quota for Jewish students at university in Russia in those days, and if you were a girl you were not part of the quota.  He really wanted her to go to university, because she was really very clever and he could see that.  His brother had emigrated to the States, so he just decided that he was going to pack up and go.  They had moved from somewhere in the borders of Poland to Ekaterinburg in the Urals, and they decided they were going to leave.  I don't know why they didn't go to the United States where his brother was.  The story goes in the family that he had an X-ray and they found something and wouldn't let him in.  So they just took the first boat out and they ended up in Argentina.  There was my great-grandfather, his wife, who was quite a religious, observant woman, two daughters and a little son.

My great grandfather was determined that he wasn't going to live in a ghetto in Argentina, because he said he didn't leave Russia to go from one ghetto to another.  So instead of going to where all the Jews were going – I'm talking about 1910, more or less, when he came to Argentina – he went to live in a place where the other immigrants were Italians, Spanish.  They (my family) couldn't speak a word of Spanish, and apparently the little boy died, and for two days my great grandmother wouldn't say anything because she was afraid he was going to be buried in a Christian cemetery.  

He didn't leave Russia to go from one ghetto to anotherIt sounds very strange because I never associated anybody in that part of the family with religion. My great grandfather even refused to go to his second daughter's wedding because she was marrying an observant Jew, and it was going to be a religious ceremony.  The two youngest daughters had to pick him up to take him to the party once the ceremony had finished.  

This carried on in my family, because when I was a kid I was not allowed not to go to school on Jewish religious days.  My father said, “If you want to take the day off (because you could if you were Jewish), you have to go to the synagogue”.  Which I wasn't going to do, but he was right.

SA:  So your family weren't religious at all – none of them was religious?

IS:  None of them; never.

SA:  So what was Jewishness to you family?

IS:  Food, culture… I don't know, it's this kind of thing about learning and trying to make something of yourself.  They were also left wing.  

SA:  So how quickly did they think of themselves as Argentinian rather than Russian?

IS:  Immediately.  They didn't want to be Russians.

SA:  So you didn't grow up speaking Russian and Hebrew and things?

IS:  Oh no, no.  My grandmother forgot all the Russian that she knew – she was 10 or 12 when she went to Argentina.  She could still speak Yiddish, but my father couldn't, and I couldn't speak or understand it, which, with hindsight, is a shame.   

I have always been interested in what people believe and whyAnyway, we didn't even know when the Jewish religious festivals were, apart from Rosh Hashanah and Yom Kippur, because you could take the day off from school. My dad would have nothing to do with religious ceremony.

SA:  So he was actually anti-religious was he?  Did you discuss philosophy and things at home?

IS:  My father is a very intelligent and caring man and not taking advantage of these holidays was an ethical question.  He is not anti-religious; it is just that he thinks you have to be true to what you believe and you should not use the excuse of religion [to take the day off] if you didn’t believe.  But when I was a teenager I wanted to skip a couple of days off school with my friends.

I have always been interested in what people believe and why -- what makes people believe that their destiny and life are in someone else’s hands. If your religion comforts you and makes you a better person then I have no problems with that. What I don’t agree with is when a religion becomes an institution that wants to rule not only the lives of those who believe, but everybody else as well. I don’t try to impose my lack of belief in god on anyone, and I don’t want their belief imposed on me either.

I also object to the belief by certain religious people that if you are a non-believer you do not have moral values.  Twice I was told that by colleagues who have shown much less commitment than me to our fellow human beings, and this I can not accept.  I have a very strict code of moral and ethical values that make me who I am and drive me to do what I do.

We discussed everything at home: politics, philosophy, history, everythingAnd yes, we discussed everything at home: politics, philosophy, history, everything.  We all talked.  And my grandfather had this huge collection of books.  He had a very large house and there were books everywhere.  And records: he loved classical music.  I always remember my grandfather listening to the radio.  There was a very famous radio station from Uruguay, El Sodre, that only played classical music, and he was always listening to that.  In fact I never knew anything about pop music till I was about 12.  

SA:  You were brought up in the same home as your grandparents, were you?

IS: Yes.  My parents were both junior doctors and they really didn't have a lot of money.  My mum got on very well with my grandparents and she didn't mind living there.  Also she's a psychiatrist and she could use the study to see patients.  But then they managed to get some money and finally bought a flat.  When we moved I was 12 – it was the last year of primary school.
 
SA:  When you say your grandfather had this fantastic collection of books, did you very quickly discover them and start reading?

IS:  Oh yes.  I read Anna Karenina when I was 12, though I probably didn’t understand half of it!  And I remember reading Garcia Marquez’s 100 Years of Solitude when I was 13.  I was reading stuff at 12 and 13 that people usually read much later.

“You had to do something for society”

SA:  And did any of that play into you becoming a doctor?  How did you find yourself doing medicine?

IS:  Well my parents are both doctors.  

SA:  So you talked about medicine at home?

Being part of society was very important in that familyIS:  Well yes, but my grandfather was a lawyer.  He had been a civil rights lawyer when he was young, defending people's rights to freedom of speech and things like that.  I always wanted to do something that could help other people.  It was a family in which you didn't do things just for yourself, you had a bigger vision.  Being part of society was very important in that family, and you had to do something for society.

Again going back to my grandfather, he was in the committee to help the Spanish republic and a committee against racism.  He was one of the founders of the Argentinian communist party.  But he left within two years -- his name was erased from the records and his picture from the photographs -- I think, because he couldn't stand the fact you were programmed to a particular way of thinking.  

We now know what communism did to the Soviet Union, but we're talking about 1919, when the idea was that you were there to help other people, that everybody was going to be equal… It was a wonderful dream that turned into a nightmare, but it was still a dream then.  I think he must have realised pretty soon that it wasn't the dream he exactly wanted, and although he was always left wing, he got out of the structure.

SA:  You talked politics at home a lot did you?  And how did you become politicised yourself?

IS:  It was part of everyday life.  It was discussed and I was listening.  I suppose it's like my son now: he hears Charlie, my husband, and me talking about politics and he just absorbs it. Charlie grew up in South Africa and he went to school and university there.  He was opposed to apartheid and decided he could not live in a country where your skin colour determined whether you were considered human or not. So he also has an interesting political background.
 
I went to a wonderful secondary school with my friend Alba whose grandfather was an exiled artist from Spain that my grandfather had helped.  My grandfather helped a lot of Spanish artists who are quite well known.  He had a collection of over 100 paintings, and when he died he donated them to the Buenos Aires Art Museum.  In his will he said, “Art belongs to the people and should go back to the people.”  

My grandmother, my aunt and my father agreed, and were left with nothing.  They never expected to inherit the paintings.  That's just the way they thought.  But with the things the family went through afterwards, we all wished they had kept at least a few of those paintings.  It would have been good to have a bit of money.

SA:  How important was your grandfather to you?

IS:  He was hugely important.  I loved my grandfather.  And I think my grandfather loved me.  When I was nine years old I convinced him to buy me a Christmas tree.  Nobody could believe that my grandfather, who was an atheist, would buy a Christmas tree!  Even he couldn't believe it.  And they said to me: "You will have to be a lawyer, because if you can persuade your grandfather to buy you a Christmas tree you can persuade anybody to do anything!"

Medicine or history?

SA:  You were telling me earlier, before we got diverted, how you got into medicine…

I like to understand why things work and why things happenIS:  I always liked medicine.  I always liked science.  I always liked biology.  I like to understand why things work and why things happen.  Everything has a logic and a reason… In a way I think being a doctor gives you some protection against your fears of disease, because at least you know the mechanism of what goes on.  And my parents were doctors and they liked what they did, although they were completely different branches.  My mother is a child psychiatrist and my father is a gastro-enterologist.  

I wanted to do something that I liked and that would allow me to work and give something back to society, in a way.  But my other great love was history, and I really didn't know whether I wanted to do history or medicine.  I remember the first year of university, I decided I was going to put my name down for both, and then I thought: do I really want to study history in a country where the next dictatorship is going to tell me which books I can read and which books I cannot read?  No, I don't.  I can study history on my own. I can do what I want.  At that time I was fascinated with medieval history, because I think it's what set the foundations of what European civilisation is today.  Anyway, I just decided I was going to do medicine.

SA:  And did you ever regret it?

IS:  No, I never regretted doing medicine.  I like it.


SECTION 2

Life under a military dictatorship

SA:  Okay, so carry on telling me about your politicisation…

You have to be able to sleep with yourself at nightIS:  In 1969, when I was 13, there was in Argentina an uprising in a town called Cordoba by students and workers. (At that time there was a military dictatorship in Argentina). Two students were killed in Cordoba and one student was killed in another town, Rosario.  My school, which was a special school, equivalent to a top grammar school here, was part of the university rather than being run by the ministry of education like all the other secondary schools.  All the universities in the country went on strike, and our school, being a university school, went on strike as well.  

I was supposed to have a history exam that day, and the previous month I was the only one to get ten out of ten in that exam.  I was 13 years old, I didn't know whether I should go to the history exam or do the strike.  I remember walking into school and one of the other pupils sniggered and said, "Oh, so you were so revolutionary, and now look!"  And I said, "Yes, well I just came to see who was coming to do the exam and then to walk out".  

I had the whole afternoon, and I didn't know what to do, so I went to visit my primary school, which I'd only left about five months previously.  One of the teachers was married to an army officer, which I didn't know at the time, and she told me off.  I remember going home to my mum in tears, and my mum said, "Did you do what you thought was right?"  And I said, "Yes".  "Then you did the right thing", she said.

There's one thing I got from my family and that is this very strong, overriding conscience – the idea that you have to do what is right, whether it's in your immediate best interest or not.  Of course you're not going to be stupid enough to get yourself killed.  But you have to be able to sleep with yourself at night.  

When you get to my age now you realise that you can only modify little things at a timeSo, [the fallout from the uprising in Cordoba] was my first political experience, basically.

SA:  Talk me through exactly how it got so dangerous that you had to leave Argentina.

IS:  What happened is… If you think about the 70s in Latin America:  Che Guevara died in 1967 in Bolivia.  The Cuban Revolution was still something to look up to – Cubans had overthrown the dreadful Batista regime.  We were all full of hope for this new man, Castro, and this new world where everybody would have opportunities and there would be no hunger and no poverty.  That's a very powerful engine for young people.  (It's good that young people think they can completely change the world, because when you get to my age now you realise that you can only modify little things at a time)

There were lots of armed groups against the military dictatorships in Latin America, which again you have to put into the Latin American context of the time.  Those guerrilla groups then saw themselves as an army fighting an honourable kind of war.  
There were groups all over – in Chile, in Uruguay, in Colombia, in Honduras, in Nicaragua, everywhere.  They were what were called the liberation armies.   

We did not realise that our dreams were bound to become nightmaresBut I think we were really very politically naïve, because in a way we just opened the door, provided an excuse, for the oppression that came afterwards.  And also because we did not realise that our dreams were bound to become nightmares – as I discovered from being in Cuba a couple of years ago.  I'm really very disappointed about lots of things now, but at that time… 20 years of age, full of hope… I was in one of the groups that supported those people, until I started to become disenchanted by what I saw as people just pushing aside our moral and ethical principles when they were inconvenient.  By the time the 1976 dictatorship came along I was full of doubts.

Coup d'état and the price of dissent

When the coup d'état came, things started to get really serious.  I was in second year medical school, and I had had a relationship with this boy who I was completely in love with, Carlos.  It wasn't a very long relationship, but he was the love of my life.  When we finished the relationship we carried on being friends.  I remember one day -- it was June, so it was winter in Argentina -- I was ill in bed.  My brother was 10 years old.  Carlos came to visit me and I remember asking him to make tea for my little brother because I couldn't get out of bed.  That was the last time I saw him.

They tied their hands with wire and dropped them from a helicopter into the riverI keep repeating this memory in my head and it's so mundane, isn't it?  I had no idea at the time that Carlos was going to disappear.  He was living with a guy who was even more involved than he was, and the following week the army went to their house. I heard later that Carlos was wounded, but they captured him alive.  They tortured him, and then, as they did with lots of people, they drugged them and they tied their hands with wire and dropped them from a helicopter into the river to drown.  

I remember a couple of weeks later phoning his house and his father told me that his mother and his sister were in Brazil, and it finally clicked that something must have happened to Carlos.  Then the army went to the house of a friend of his, whose parents were friends of my parents.  Fortunately he had gone to Mexico, but at that point I thought: I can't stay at my house any more.

SA:  You realised it was too dangerous?
 
IS:  Oh yes, yes.  I remember -- we were back in the house where my grandparents had lived, because when my grandfather died my grandmother moved to a flat and we moved in – and I had more or less worked out how I could run across the roof tops to escape.  I had this plan in my head, but I don't know if I could have done it.  And then I knew that I had to move.  

First I lived for some time in my aunt’s house, but it was too close. Then Carlos's mum phoned me and told me that his body had appeared and they were going to bury him in La Plata, a city near Buenos Aires where he was born. That was 24th September, I think.  I went there with his mum, his aunt and his grandmother, and his mum told me what had happened – that the corpse had appeared floating in the river and that they had called Carlos's father to identify him.  She said, "You have to go".  

They didn't ask questions, they just took them because they were Jewish and they saved themI remember I went back home and I spoke to my dad and mum.  At that time I had already stopped going to my political meetings – I'd stopped around the time of the coup d'état, which was 24th March, and by that time I was already quite disengaged.  I remember sitting with my mum and dad and saying that I had to go, and I think they were relieved.

My mum said, "Well you can go to Israel", because Israel was taking all the Jewish young people who were involved.  They didn't ask questions, they just took them because they were Jewish and they saved them.  A lot of those young people were supporters of the Palestinians, which was an interesting thing!  And I said very haughtily, "I can't go to Israel, I don't support their foreign policy!"  People who had no choice were taken by the Israelis, but I wasn't going to go.  

So there was the option of Mexico, where my aunt had friends and I had been on a holiday there two years previously.  The other option was going to Spain, where this friend of my dad had just opened a branch of his security company.  And I thought: well, I've been to Mexico, I've never been to Europe, I better go to Spain.  I was 20 years old, that's how a 20-year-old thinks!  When you're 20 you're a grown up and you're a child.


SECTION 3

Exile in Spain

SA:  Absolutely!  But you ended up in Spain – could you go straight back into medical school?

I ended up in Spain, where there were a lot of exiles at the timeIS:  I ended up in Spain, where there were a lot of exiles at the time.  At the beginning I was just going from one place to another.  First I went to live with a lawyer who had defended a member of one of the armed struggle groups in Argentina, who were all eventually killed in the famous Trelew massacre in 1972.  They tried to escape from detention and the army just murdered them; there were three survivors.  And when the army came to power they were hunting for the lawyers who defended them.  

This guy had never supported any armed struggle, he was just a civil rights lawyer.  He had to leave the country at the age of 50, move to a country where he couldn't work as a lawyer.  I mean, can you imagine how difficult that must have been?  And me going to his house… They had four grown up kids; it was just awful.  Then I moved around, and one of the places I stayed -- and I stayed for five months, that really saved my life – was a cousin of one these artists that my grandfather had helped.  He lived with his wife in Madrid. They were like a family to me.

SA:  And did you go straight back into medical school?

IS:  No, no, it was really difficult.  First I started working in my father’s friend's security firm as a secretary, and I really hated it.  I wanted to go to medical school, but I would have had to start again in year one, and it was so depressing.  I was 21 and on my own for the first time in my life.  I had come from a very close-knit extended family, where you always had somebody to rely on, and suddenly I was on my own.  Because although there were other people, you can imagine: a family in their 50s, exiled, with no work, looking after four children -- they can't look after an extra adolescent.

I was 21 and on my own for the first time in my lifeBut back to medical school… I arrived in Spain in October, and classes started in September, so I could just join the first year.  But I also had to work, because the previous year there had been a huge economic crisis in Argentina.  The currency was devalued and my parents didn't have any money to support me.  My father's friend ordered his office in Madrid to give me a job and to pay me US$200, so that I could survive.  

The first winter there, I have this image of myself sitting in the tube in Spain, it was January, and I just wanted to cry.  It was all so depressing.  And then my aunt came to Spain with news that my best friend in Argentina, Silvia, had disappeared.  When I left she was pregnant, and now nobody knew where she was.  I was crying and crying and it was awful.  

I was living with this family in Madrid by now, and the guy, Victor, was always very grumpy.  But he was fantastic over all this -- he could understand what I was going through, because he had been the same age when the same sort of things had happened to him in Spain: he joined the Republican Army towards the end and had to retreat to France.  I can't remember what he said, but it was very comforting -- my boyfriend, my best friend, lots of friends had been killed and disappeared.  

I do have personal understanding of what parents go through when they lose a childThere is a book that was published a few years ago about the children from my school who disappeared – the ex-students of the Colegio Nacional Buenos Aires -- and there are 105 names in it.  I personally knew 35 of those people.  Some of them were very good friends.

SA:  So what has that done to you – living through a period when your own friends were disappearing?  How has that affected your philosophy of living and the work that you do?



IS:  I don't know.  I think it might be two contradictory things:  on the one hand I think I do have personal understanding of what parents go through when they lose a child.  At a bereavement conference some time ago they read out something that a mother said on the death of her baby.  She said that not only did her family lose a four-and-a-half-month-old, they lost the toddler, and the child who would start school, the pimply adolescent, and the wedding and the children and the grandchildren [she weeps]… I can identify with that because sometimes I think about Carlos' children that could have been mine -- or somebody else's, it doesn't matter -- but it's the future.  And it's the loss of the future that is so painful.

It's the loss of the future that is so painfulSo on one hand my experience makes me understand what loss is.  On the other hand it makes me very intolerant of people who complain about minor things.  It makes me just want to say: "Come on, get on with life."

The struggle to get back into medical school

SA:  Going back to your medical training – you put yourself through medical school by doing secretarial work did you?

IS:  No, basically I dropped out for a year.  The idea of doing chemistry again -- I just couldn't face it. But one day having lunch with friends of my family, I met a Spanish lawyer who told me he was very friendly with the university’s secretary.  And he picked up the phone and called him and said, "I've got this girl who did a couple of years of medical school and she wants to carry on studying."   

After 40 years of Franco’s rule, learning was not a high priority in SpainThere was an accord between the two countries, Argentina and Spain, to accept each other's diplomas, but they'd never done this with partial studies.  But my mother sent me all the stuff that I had done in Argentina – the programme of anatomy, Histologythe study of cells and tissues, usually carried out with the aid of a microscope., psychology and all that – and I went with all this stuff to see the university’s secretary.  

I had done French at school and my parents had made me study English since the age of seven, so I could speak English, though not so well. And I loved history. I always liked reading and studying – mine was a tough school where you had to learn, and I've always been a bookworm.  Anyway, I started talking to this guy and he couldn't believe that a 21-year-old could speak three languages, knew about Shakespeare and Cervantes, and could talk about history and the Greeks and geography and so on -- after 40 years of Franco’s rule, learning was not a high priority in Spain.  

He picked up the phone and called the guy in the School of Medicine -- a famous Spanish doctor, who was in charge of recognising titles and subjects and whatever -- and he said, "I've got this girl here and I'm sure you'll want to accept all her partial results."  Which they did, straight away.  So I missed one and a half years, but I ended up going into third year medical school rather than starting again at the beginning.  I met my first husband, Luis, through the daughter of the university’s secretary.

SA:  In your career in medicine, how often have these chance things -- like meeting this guy at lunch who had contacts at the medical school -- played a role in your life?

I'm a paediatric pathologist by pure chanceIS:  Oh a lot.  I'm a paediatric pathologist by pure chance.  

SA:  How did that happen?

IS:  I finished medical school in Spain.  Luis and I lived together for a year, which in Spain was unheard of – very Catholic country at the time.  I remember his mother telling him, "She's not even a Christian!"  Anyway, after a year we decided to get married, because if I had a Spanish passport I could go back to Argentina without fear of not being allowed to leave again. 

A narrow escape

Before I forget, I'll tell you another story – and it's a story that I erased from my mind for almost 15 years.  Memory is very wise – you don't remember what you can't live with.  But my father reminded me. When I left Argentina for Spain that first time, I was sitting on the plane on my own.  It was university term time and I was a student.  The steward came asking for my passport and the passport of the guy who was sitting next to me, and another one – there were three young people travelling on their own on that plane.  

Memory is very wise – you don't remember what you can't live withAfter five minutes he gave it back to me and I asked, "What was the problem?"  He said, "Well, the Air Force wanted you to come down off the plane, but we told them this was Spanish territory, they had no jurisdiction.  If they let you through customs, it was because there was no problem so they had no right to take you off the plane now".  

My dad told me later that when he was watching from the terminal, he saw these armed forces police boarding the plane and he said basically that his balls went up into his mouth, he was so frightened.  But it was a Spanish plane and the crew told them they had no jurisdiction.  If I had been travelling on an Argentinian plane I don't know what would have happened to me.  You can imagine why I forgot it for 15 years!

Luis and I got married, and we had a big party in Spain, then we went to Argentina and had a big party in Argentina.  In 1980 it was still dangerous.  (The military dictatorship fell after the Falklands War, which was in 1982.)

A chance to work in a research lab

Luis found a job at the Banco de Bilbao, and because he spoke English they decided to send him to London for a short while, so we spent six months here.  I had finished medical school so I came to London with him.  That was 1984.  Spain was not part of the EU, so I couldn't work as a doctor here.  But my dad said, "Why don't you talk to Julia Polak?"  Julia Polak's uncle, Moises Polak, was a famous Argentinian neuropathologist who had been a friend of my father.  And my father had been Julia's tutor at university.

So that's how I went to work with Julia.  I had six months in London and nothing else to do; it was an opportunity.  I was given the job of a research assistant, and I remember I learnt to do In situ hybridisation A technique allowing scientists to identify particular DNA or RNA sequences while these sequences remain in their original location in the cell..  I met really nice people, some of whom are still friends.

I saw the birth of the new Spain.  Madrid became a wonderful place to beHow did I get into pathology?  Well, after qualifying as a doctor I had done a year of ophthalmology in Spain, but decided that wasn't for me. When we went back to Spain I had to prepare for the exam, which I really didn't want to do.  We rented a house in the mountains.  I had a dog and four cats, and I didn't study much -- it was a lovely time.  But Luis was really desperate to go back to London.  He hated working in Madrid at that time; he said it was provincial.  

If you think, with the Civil War most of the intelligentsia had left; there were practically no middle class intellectuals left in Spain, certainly not in Madrid.  Everybody had gone to Argentina or to Mexico.   In 1976 when I arrived, book culture was not very widespread in Spain.  Madrid was a provincial town.  There was no classical music, no decent theatre, no books, no nothing.  So much so that I became friendly with a guy who had a stationery and book shop because I was his only regular customer for the books. We used to talk about books.  He had the book shop because he loved them, and the stationery because he needed to live!  

But, I have to say that I was fortunate: I moved to Spain after Franco died, and watched how that country changed 180 degrees.  It was like seeing the birth of a child!  I saw the birth of the new Spain.  Madrid became a wonderful place to be.  I was really lucky: I didn't have to live in Spain during Franco's time, which would have been horrible, and I didn't have to live in Argentina during the dictatorship.  So I was in the right place at the right time.


SECTION 4

Licensed to practise in UK

SA:  So how did you manage, eventually, to practise medicine in the UK if Britain didn't recognise Spanish qualifications?

I keep my Spanish passport because of a sense of loyalty to the country that really helped me when I needed it mostIS:  Well we went back to Spain, and then Spain got into the EU.  We then came back here – Luis moved Heaven and earth to come back to London, because there was nowhere like it for him.  I think mine was the first Spanish medical diploma that was recognised by the General Medical Council after Spain joined the EU in 1986.  Or if it wasn't the first, it was one of the first.  

I had a Spanish passport by then.  I remember that when I had to go and swear before the Constitution I was so proud. And the first time I voted!  I've been in England now for 21 years and I love this country, I really do.  Sometimes I think: should I get a British passport, because I should be voting here? But I keep my Spanish passport because of a sense of loyalty to the country that really helped me when I needed it most.

So then I got my qualification recognised.  I'd been in Spain for these two years preparing a PhD, and when I knew that we were coming back to the UK for a long time I got some letters of introduction from people.  I got one to Salvador Moncada, the guy who discovered the role of nitric oxide in the body.  I got a letter to a person who was doing research into neuropathology.  And I got a letter to this fantastic Spanish pathologist called Fernando Paradinas, who looked like Don Quixote – the very ideal of the Spanish gentleman: thin, with a long face and a beard.  He is retired now but he was one of the best pathologists in this country.  

I didn't even know what a black box was!I phoned the neuropathologist guy and he didn't take any notice.  I phoned Salvador and I don't know whether he understood what I wanted – he was head of a research lab, and we became very good friends, though he didn't offer me a job.  And then I phoned Fernando Paradinas who worked at Charing Cross Hospital, and he said, "Well come and see me". The work I'd been doing with Julia Polak was extremely useful -- they offered me a job as a research assistant with Dr Bernard Fox at Charing Cross, and said that in the meantime I could go and learn some pathology.

Fernando used to be called "The Spanish Inquisition", I remember!  He used to organise the ‘black box’. D'you know about the black box system?  The black box is something that happens in all pathology departments in the UK, and basically it's a black box where you put the week’s interesting cases, and then you give them to the junior doctors with a minimal history, and they have to come to a diagnosis, or a differential diagnosis, and the cases are then discussed by the group once a week.  The system teaches them; it trains them to diagnose.

I remember, I didn't even know what a black box was!  They were all men in that hospital at that time; I was the only female among the junior doctors, and the consultants were all male.  (The only female was a part-time neuropathologist, Wendy Grant, who started to raise the subject of CJD and people didn't pay too much attention to her.)  As I say, I was the only woman there, and I remember Fernando saying with a smile, "Well let's see if we are wasting our time teaching Dr Scheimberg."  

Let's see if we are wasting our time teaching Dr ScheimbergHe put a slide up on the television – not one of the flat screen televisions we have now, the old ones -- and it was the appendix of a 35-year-old woman.  I just thought: a 35-year-old woman, an appendix, with pain.  I had seen very few things but I thought: he won't be asking me something that he doesn't expect me to know.  The only thing I've been looking at so far has been female genital tract pathology.   It must be endometriosis.  And he said, "Oh, so we're not wasting our time!"  It was just luck and reasoning, basically.  Then a job came up and I went for the interview and got the job.  And that's how I started in pathology.

Fernando was a fantastic teacher.  He knew everything, but he was incredibly modest.  Everybody that went through Charing Cross will tell you about Fernando Paradinas.  We were all a bit in awe of him, but he was a really fantastic teacher.  You'd show him something and he'd say, "Mm, I saw this in 1965…"  He had this fantastic memory.  He had a collection of slides from 20 years before that we all used to practise for our exams.  He was really wonderful.

SA: And did you get excited by pathology at that stage?  Did you think: this is the direction I want to go?

Maybe that's why I like paediatric pathology -- because again you have to be know a bit of everythingIS:  Well pathology was something I always liked, because I always thought: if you go for a speciality, you'll learn everything there is to know about the heart, say, or the kidney, or whatever, and forget about the rest. Well, in pathology you keep a grasp on everything.  But it's interesting, because now pathology also is sub-specialised, and you have people who only do gastrointestinal pathology, or whatever.  Maybe that's why I like paediatric pathology -- because again you have to be know a bit of everything.

SA:  I was going to ask you -- how exactly does paediatric pathology differ from adult pathology?

A focus on children

IS:  Children are not dwarf adults, okay?  They're not little adults.  They've got different sorts of diseases.  And for an adult pathologist, it sometimes takes a long time to get your mind around to thinking about children's diseases, rather than conditions that are common in adults.  It's like a parallel world: you need to focus on different sets of diseases and a different set of things in paediatric cases.  

Children are not little adults.  They've got different sorts of diseasesThen Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathology is a completely different kettle of fish again, completely different.  It's much more of a ClinicopathologicalPertaining to both the signs and symptoms of a disease (the clinical picture), and the nature, causes and consequences of the disease (the pathology). correlation thing. You need to put together the clinical information with what you see at autopsy and under the microscope, and correlate the findings to try to explain what could have happened. The amount of obstetrics and neonatology and physiology you have to know is quite substantial.  What I always say to the students is, "When you do a perinatal postmortem, it's as if you are trying to make up a puzzle in which lots of pieces are missing.  Little pieces.  So every piece of information you have is essential in order to build a picture.  You may not be able to show the picture exactly as it is, but you can get an idea of what happened".  

It's as if you are trying to make up a puzzle in which lots of pieces are missingThe more experience I have of Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathology, the more I realise that it's a lot of speculation.  But it’s not speculation out of the blue -- I see a pattern of infection or whatever.  The other day, for instance, I was looking at a placenta, and there was a little chorionitis and sub-chorionic abscesses, and I thought:  Oh, this looks like group B strep.  And now that we've got these wonderful computers, I could go and look, and lo and behold the lab had done microbiology from the baby's side of the placenta and they grew group B strep.  Now if you are an adult pathologist, you'd say, "Chorionitis.  That's it".  They have too many other things to think about.

SA:  Is Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathology fairly new as a specialisation, and is it developing all the time, or has there always been this?

It's a lot of speculation.  But it’s not speculation out of the blueIS:  Well no, for a long time there were very few specialists – people like Jonathan Wigglesworth, Ian Rushton or Jean Keeling– and in most hospitals the babies were left to juniors and whoever was there. Then about 20 years ago a group of people started to get interested in Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. cases. They realised that it wasn't just a left-over thing [that is, of marginal importance], it was very interesting; and it was something that could help people who were absolutely devastated by what had happened to them.

Losing a baby is as bad as having cancer.  Or even worse, because a lot of mothers think that it's their fault.  Very few people who have cancer feel that it's their fault, but a lot of mothers who lose babies or children or intrauterine pregnancies or have a miscarriage feel: I've done something wrong and that's why the baby died.  Especially for babies who die in utero.  What have I done to kill the baby?  And they haven't done anything.  

SA:  So before then, what happened to babies who died in utero or just after birth?  Was it just considered unfortunate and not investigated?

Losing a baby is as bad as having cancer.  Or even worseIS:  No, there were a few people, and if mothers were in the right hospital they'd get a very good report from an eminent person like Jonathan Wigglesworth.  But there were very few of them.  So what would have happened in most other hospitals 30 years ago is someone would have done a postmortem and said, "Okay, well there's no malformation; I cannot see any major infection".  And that's it.  They couldn't say any more about what killed the baby.  But nowadays there are very, very few cases in which we cannot say something useful for the next pregnancy.

There are very, very few cases in which we cannot say something useful for the next pregnancyFor instance I'm currently doing a postmortem – it's a huge baby with an immature placenta, and if that mother doesn't already have diabetes, she will develop it.  I can tell that to the obstetricians.  Or there's another case in which a woman had three early miscarriages.  I get the fourth miscarriage, and I look at the history and think: This is the fourth miscarriage in four years, all before 20 weeks.  You look at it; you see the typical pathology and you tell the clinician, "Be careful, this woman might have lupus”, an auto-immune disease.  Now if you're not a specialist you will miss it.

SA:  And how many people get that kind of service these days?  Are you very rare?

IS:  Yes.

SA:  Why?

If you're not a specialist you will miss itIS:  Fortunately there are not so many babies who die.  And what's happened now is that in the majority of places we have managed to centralise Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathology services.  There are a few places where adult pathologists do the babies, and we're trying to help them by taking that work off them, because we know it's not fair for them.  They are asked to do something that is much more specialised than people often realise, and it's not fair on them.  If they do make a mistake, they don't make it because they are careless; they miss something because we are talking about super-specialisation.  If you ask me to look at a breast biopsy, for instance, I can diagnose a major cancer, okay?  But I could miss lots of little things. So it's a special skill.  

Nowadays, I cover most of the north east of London and some areas around it.  So we take care of all these babies.  And you can see the level of satisfaction increase, because when you start doing this work for a hospital, they’ll say, "Oh we'll only send you about 20 babies a year."  And after two or three years when they're getting results – and the clinicians can show results to the parents so they're much more confident about asking for consent -- you go from 20 to 40.  We've got a hospital – it's in a very high risk area – which sends us up to 60 babies a year.   

Many people have come from the countryside and still believe that the Koran is against autopsiesIn my hospital, when I started 11 years ago, there were eight postmortems a year, and now there are at least 25.  At one point I was complaining that we didn't see enough babies, and they showed me the statistics and said, "What are you talking about?  The national percentage of stillborn babies that go for postmortem is 42% and in the London Hospital it's 50%."  And that's in a population that is largely Muslim, where many people have come from the countryside and still believe that the Koran is against autopsies -- which it's not, incidentally.

Questions of culture

SA:  So have you broken through and managed to convince the Muslims round here?

The important thing for Muslims is to bury their dead as soon as possibleIS:  Not everybody, but more than before.  The important thing for Muslims is to bury their dead as soon as possible.  We do our best to do the postmortem immediately, so they can bury the babies as soon as possible.  But it's all a bit of a misunderstanding, because burying a baby as soon as possible in Islamic tradition has to do with the climate where Islam started, not with religious decree.  It's to do with respect for the dead, because, like with most religions, what you don't want is the decomposition of the body, and in order for the body not to decompose, especially in a hot climate, you have to bury it immediately.  

In fact, a lot of families now embalm their relatives to send them back to Pakistan, and it can be a week before they are buried.  So the issue is not the length of time, it's that the body mustn't be allowed to decay.  And there are similar misconceptions about postmortems.  All religions are against desecration of the body; but a postmortem examination is a medical procedure, not a desecration of the body.

SA:  But is desecration a popular perception…?

IS:  Oh it's a popular perception since Alder Hey!  When you ask for consent for research for the blocks and slides that you have taken anyway in the course of postmortem, unless you take your time to explain to people that the kind of research you're talking about is not cloning, it's not esoteric things, it's about normal mechanisms of how things happen, they will refuse.  But it's just that people don't understand and people don't take the time to explain properly.

A postmortem examination is a medical procedure, not a desecration of the bodySA:  But Alder Hey was in the late 1990s -- are things beginning to change?  Are you getting a softening of attitudes?

IS:  Yes, I think we are getting a softening of attitudes.  I think the fact that the consent is now so thoroughly done... and especially if the clinician explains to the family that we are trying to help them.

Why do a postmortem?

SA:  So what would you say are the principal purposes of a postmortem?

The main reason to do a postmortem is for the family.  And that's something you should never lose sight ofIS:  Well, the main reason to do a postmortem is for the family.  And that's something you should never lose sight of: you want to tell a family what happened with the child.    When a child dies the parents tend to feel guilty.  As a parent you're supposed to be able to protect your child, and the child's death is like a failure to protect.  So it's very important that there is a professional there to tell parents that, no matter what they did, this would have happened because that guilt is a really terrible burden for a parent.

If a parent consents to a postmortem – sometimes asks for a postmortem – it’s because he or she wants to know what happened to their child.

The postmortem is the first and only time that that child – particularly if it's a very young baby – will be examined by a doctor.  We are that baby's doctors; we have a duty to them and to their families.  Because what we find will not only help the parents in their grief; it might also help them if there’s the possibility of the same problem occurring again in another child.  It might help them to plan future pregnancies, when they know what the first child died of and they can get help.  So a perinatal postmortem is not just a closure; it's a closure and a continuation, because it helps families to carry on with their lives, and have more children and to have a life
.

SA:  Can you give me an example?

We are that baby's doctors; we have a duty to them and to their familiesIS:  There are several cases, though they may not sound so dramatic. I did a postmortem on a ten-week-old baby, who had a very rare heart condition.  Had the postmortem been done by a non-specialist, this would probably have been missed.  But it meant the family could have proper counselling about the chance of the same problem occurring again.  

And I've got a photo on my wall of the second child of a woman who had an autoimmune disease and lost her first baby.  What we found at the postmortem allowed the obstetricians to rescue the second baby, who had to be delivered prematurely, but it was fine.  I've got a photo of that second baby aged two, and these are really very rewarding moments.

SA:  So how often do you think that the cause of death on the death certificate has been inaccurate?

IS:  The confidential enquiry into stillbirth and death in infancy found that "…in 70% of postmortems on children done by a non-paediatric pathologist, essential tests were omitted, and the diagnosis was deemed to be incorrect in approximately 20% of cases.  And these led to failure to recognise inherited conditions and on occasions led to inappropriate suspicion of harm."  So the postmortem is very important for audit purposes also.

The mortality in congenital heart disease has decreased dramaticallyAs I said, the most important purpose is for families.  But postmortems are an important element of teaching and training too.  Medicine doesn't only progress on big, wonderful discoveries that may bring people the Nobel Prize.  Medicine progresses little by little; it's like building a wall in which every little piece of knowledge is a new brick -- and pathology can give a lot of bricks to that wall, as well as helping families.

Let me give you an example: 20 or 30 years ago children were being operated on for congenital heart disease and the death rate was quite high.  Now the death rate for the same malformation has come down dramatically.  And the reason is that the hearts of the children who died after an operation were being kept and they were being studied by the paediatric surgeons who had done the operations.  

Little by little, they were discovering the abnormalities in these hearts that might not have been so obvious at first.  They were realising that maybe they should put the stitches in this place and not that.  And maybe the conduction system was also in the wrong place.  And as a consequence of those investigations the mortality in congenital heart disease has decreased dramatically.  

What we do is not at the cutting edge of research, but it is what cutting edge research is based onSo, as I say, what we discover is not very dramatic:  it's not the kind of thing that makes the headlines or gains the Nobel Prize.  We're the workers, like the ants.  We're just adding the little brick that might not look important in itself, but when you see the whole wall, you realise how important it is for that brick to be where it is.  I mean what we do is not at the cutting edge of research, but it is what cutting edge research is based on.

SA:  So do you now work with the clinicians, and try to make them realise the importance of having these investigations?

IS:  Yes, I talk with them, and I say, "Listen, you've got to explain this and this, and if they have a problem they can phone me…"

Someone has to carry on with the work when I'm no longer here; the knowledge has to be passed onIn coroners' cases I write a personal letter to the families.  I use the name of the child, and I explain to families why I'm asking them if we can keep blocks and slides.  In the first place because it's important for their sakes in case there is a problem or something later.  Then so that we can use them for teaching and training.  Because someone has to carry on with the work when I'm no longer here; the knowledge has to be passed on.  And then I explain why we need them for research, and what type of research we're talking about -- because it's important for them to know that it's research that will benefit them personally, but we can't do it unless we have specific consent. 


SECTION 5

The shaken baby controversy

For instance, one of the things I'm trying to find out is the mechanism of dural and intradural bleeding in babies that do not have trauma, okay?  Because there's this big controversy about ‘shaken baby syndrome’, and whether hypoxia has a role to play.  What we see is that in lots of intrauterine deaths and intrapartum deaths, in which there is no particular trauma or violence, there is bleeding, particular in the dura, the membrane that covers the brain.  And even when you don't see haemorrhage in these hypoxic cases, when you look in the microscope you see that these blood vessels which are very weak are broken and blood is seeping out.  

Is there really a connection between hypoxia and bleeding within the dura?So one of the things I'm trying to find out is: is there really a connection between hypoxia and bleeding within the dura?  And then maybe later: is there a connection between bleeding in the dura and Subdural haemorrhage Occurs when a blood vessel ruptures and blood builds up between the brain and the brain's tough outer lining, the dura.?  But at the moment I'm in the first stage.  I want to understand why all these hypoxic babies have bleeding within the dura when there is no evidence of tearing.

SA:  What sort of ages?

IS:  Any intrauterine or late intrapartum death.  Or babies that die in the neonatal intensive care unit after a few days – something where there could not be any possibility of trauma.  Some people would say, "Well, the act of birth is traumatic."  Fine, if the act of birth is traumatic, I want to know what's the difference.  

The problem with the shaken baby controversy is that it's very dogmatic.  If I don't accept religious dogma, I'm not going to accept scientific dogma. If something is there, it can be provenYou see, the problem with the shaken baby controversy is that it's very dogmatic.  If I don't accept religious dogma, I'm not going to accept scientific dogma. If something is there, it can be proven. I need to understand the mechanism.

SA:  Okay, but what's the connection between shaken babies -- that's babies that have been born -- and babies that die in the uterus?

IS:  That we see Subdural haemorrhage Occurs when a blood vessel ruptures and blood builds up between the brain and the brain's tough outer lining, the dura.s in some intrauterine or intrapartum deaths.  So basically it looks the same as what is called shaken baby syndrome.  But now people are starting to accept that shaking alone cannot create all this force and that you need impact as well, and it's being changed to ‘shake and impact syndrome’.  But I see this phenomenon in other circumstances, and I want to understand the circumstances in which it can be seen where there is no violence involved.  

Because although I do think that some parents are violent and are capable of doing very nasty things to their children, I think some people are being caught in the net [of suspicion unfairly] and we may be making mistakes.  If there's no other evidence of non-accidental injury anywhere, there's no family history of violence, there's nothing, then what…?  I'm very uneasy about people just saying, "Oh, if it's got Subdural haemorrhage Occurs when a blood vessel ruptures and blood builds up between the brain and the brain's tough outer lining, the dura., retinal haemorrhage, and brain swelling, it can only be shaken baby syndrome".

We are trying to see if we can take a little of the vitriol out of the controversyWhen I go and ask people who are defenders of the traditional theory and they say, "Well it's like that because the judge ruled like that”, or “because I've never seen any other evidence,"  I think: that's not good enough.  Don't tell me something doesn't exist because you haven't seen it.  Tell me why the physiological mechanism is not possible.  I don't like dogmas.  I might be wrong, but I need to prove it.  

At the moment we are trying to see if we can take a little of the vitriol out of the controversy, and try to behave like objective scientists.  I want to understand why, in cases of hypoxia, you get haemorrhages.  Is it the same mechanism as in abuse?  Or is it a different mechanism?  We don't know.  If we find out the mechanism we might be able to distinguish some cases from others.

SA:  Have you got indications and clues as to what might be the mechanism?

Lumping together all children under three doesn't helpIS:  I've got all sorts of theories that I need to explore.  We know that in young babies the capillaries are more immature; they are smaller.  We know that hypoxia also changes the behaviour of the Endothelium  The thin layer of cells that line the internal walls of blood vessels and lymphatic vessels. and the blood vessel wall.  We need to know to what extent it does.  We always say that children are not small adults.  We need to understand the different cut off points in the development of a child that make things different.  

For instance, a baby inside the uterus won't have the same kind of mechanisms as a newborn baby, although there is a transition.  And a newborn will be different from a three year old, so lumping together all children under three, for instance, doesn't help.  I'm not saying that the mechanisms that apply to intrauterine death are necessarily the same as those that apply to intrapartum death or neonatal death, but we just don't know.

We do know that certain physiological things continue from intrauterine life to extra-uterine life, and certain things do not. The circulation of the blood changes once the baby is born, and obviously respiration and breathing changes.  But other things are more of a continuum or don't change so dramatically as a result of being born.  So we have to stop being simplistic about things, and we have to stop accepting dogmas.  We have to think: well, what things change?  

We have to stop being simplistic about things, and we have to stop accepting dogmasWhen the baby is born the environment changes, and the baby changes its circulation because it doesn't have the contact any longer with mother's circulation, so it needs to change the way the blood is distributed.  This is an abrupt change, when the relationship with the placenta ceases; like breathing is an abrupt change the moment the baby puts its head out.  But not everything changes that radically.  

And there are other things that carry on changing.  For example the physiology of the head is different when you have a rigid skull than when you don't.  If you have a structure that can expand with pressure, it will behave in a different way from a structure that cannot expand.  This is physics.  It happens over a period of time.  And I think that's what we have to focus on – on all these changes that happen between intrauterine and extrauterine life, and up to the point where things are more similar to adults.

Retained organs: a deeply sensitive issue

SA:  One thing I wanted to ask you about was Michaela Willis – you've mentioned her before.  Who is she?

Clinicians need to know when they make mistakes so that they don't repeat themIS:  Michaela Willis is one of the parents from Bristol whose son had a coroner's postmortem because he had a congenital heart defect and he died on the operating table.  At that time the pathologist, Jem Berry, retained the heart to show it at the meetings with the paediatric cardiac surgeons and other consultants.  But the pathologist wasn't the one responsible for requesting consent.  He would take the heart to discuss it with the clinicians because the clinicians need to know when they make mistakes so that they don't repeat them.  

Michaela says now that she feels privileged that Jem Berry -- who unfortunately had to resign because of all this Alder Hey controversy -- saw her son.  He was a brilliant paediatric and Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathologist, but he had enough and retired.  She says that she feels privileged that Jem examined her baby, and that the baby's heart has been of use for teaching and learning and things.  

But at the time, she didn't know that the baby was buried without his heart and she was really devastated.  And people make some impulsive decisions.  But basically she started this campaign about Bristol and the fact that these hearts were taken and nobody was told.  And that's when someone mentioned the big heart collection at Alder Hey and all Hell broke loose because of what [paediatric pathologist] Dick van Velzen had been doing.

SA:  So it started with Bristol did it?

Rights come with responsibilities; you cannot divorce the twoIS:  It started with Bristol.  And Michaela was the one who started the campaign in Bristol.  But she wasn't expecting it to become what it did become.

SA:  What are your own feelings about the organ retention controversy?

IS:  Well, maybe because of the kind of family I grew up in, I am a strong supporter of people's rights.  But rights come with responsibilities; you cannot divorce the two.  People are part of society, they benefit from what other people are putting into that society, so they have a duty to give.  Especially if it doesn't imply giving anything extra.  I tell people, "The blocks and slides that I have taken for the diagnosis to try to help you and your family can be discarded after the diagnosis, or they can be used to teach other people who will continue with my work".  

I ask on the consent form, "Can I use the blocks and slides to teach other people?  Can I use them to audit my work so that I don't make mistakes that I'm not aware of?  Can I use them to do basic research that will not affect you or your family in any way?"  When they say yes they feel part of society and they are fulfilling their duty.  They understand that they had the right to say yes or no, and they understand that, because other people have helped them and are still helping them, they have a responsibility to help other people in turn.

Some people are really angry and they feel the system has failed themWhen people say no, I think it can be for two reasons.  One, because when they are asked, things are not explained properly.  And the other reason is because they are really hurting.  Some people are really angry and they feel the system has failed them.  Another thing is superstition: "God knows what you're going to do with this material."

SA:  I think, as you say, an awful lot of it must be ignorance of pathology practice.  But what should you pathologists be doing to help people understand what your work is all about?  I mean, you’re faceless people behind the scenes to many people.

Things that don't affect us negatively should be accepted automatically as part of what is doneIS:  I don't think we should be faceless people behind the scene.  That's why I always offer people the chance to talk to me.  But sometimes they just do not want to hear.

I do think that, because we are all part of society and we have responsibilities to each other, things that don't affect us negatively should be accepted automatically as part of what is done.  My feeling is that when I die, my organs have two possibilities: either they rot and they're eaten by the maggots and go back into the cycle of life, or I'm going to be cremated and my ashes will eventually go back to earth and back into the cycle.  And I'd rather have somebody learn something from them than be eaten by the maggots!  

As I told you, I'm not a religious person, but if I were a religious person and believed that the body is the vessel that carries the soul, I'd argue that the soul doesn't need a piece of liver or what-have-you to reconstitute itself.  Otherwise what would happen to people who suffer amputations in war or lose an eye or something?  What does that mean?  That they won't be whole when they go to Paradise?  

I was disappointed by the way religious leaders were reluctant to confront this upsurge of superstitionI was disappointed by the way religious leaders were reluctant to confront this upsurge of superstition in people.  They could have explained that, yes, it was wrong that things were not explained; it was wrong that the proper consent wasn't taken; or that not enough attention was paid to it.  But they should have assuaged people's fears about the effect on their souls of losing a little piece of liver or spleen or whatever.  Yes, there are things that needed to be changed.  The process of consent had to be changed, and I think that's a positive thing: it's better to engage people, so that they feel part of it.  But…  

SA:  But Alder Hey was actually the shattering of a paradigm because, if you think about it, when we were children doctors were still on a pedestal.  They were the ones who told you stuff. The ‘democratisation’ of medicine has been very rapid, and I think the revelations at Alder Hey came at a point when all of that was happening, and it was such a gross image of the ‘arrogance’, or the Ivory Tower mentality, of the medical profession.  I think that probably is what people were reacting to.

IS:  Yes, but the issue was really badly managed from the political point of view.  It was appalling...The health secretary Alan Milburn going to parliament and saying that postmortems were "gruesome" is unforgivable.  That was reported in the press and it's unforgivable.  We have to separate things. Not requesting proper consent and not explaining things to people was wrong, and I think there have been big improvements.  But I don't think that even the parents of Alder Hey had envisaged that you'd have to ask consent for teaching and training on blocks and slides that are taken anyway for diagnosis.  

The issue was really badly managed from the political point of viewI can understand why a family says, "No, I don't want you to keep my child's or my father's brain."  But to start giving back blocks and slides!  I mean, fine.  We can end up without having anything – not being able to teach anybody, and nobody to do our job in a few years’ time.

SA:  Do you really fear that it's going in that direction?

IS:  I think a lot of effort needs to be put into explaining to people what blocks and slides are, and what research is.  Because take blocks: we all speak the same words, but a different language.  If I say the word block to an architect, it's a block of flats.  If I say block to a nursery teacher, it's something that you can hold in your hand.  If you say block to me it's something the size of a postage stamp.  So we are using the same words to express completely different things.

I personally think that, yes, we need to explain, and people need to know exactly what they are consenting to.  This is part of a diagnostic process that is only possible because of what we have learnt, so we need to allow that learning to continue.  

I hope that at some stage it will be recognised that it's impossible to carry on without imparting knowledge to future generations, and without ensuring that the work we are doing today is properly controlled.  I mean, if everybody were to say, "No you can't have tissue for audit", I could write whatever diagnosis I liked!  How are we going to find people who are making huge mistakes?

SA:  That’s the implication in the end, isn’t it?

I think people are just kind of resigned, and despondent in many casesIS:  Yes.  And the people who have responsibility for requesting consent are the doctors who are trying to do 20 things at the same time -- dealing with other patients; dealing with people who are extremely distressed at the loss of a relative, and who are being asked to absorb things that it's not the right time to absorb.  We are asking a lot of people.

SA:  So almost all medical research could effectively come to a halt if things go on this way?

IS:  If things are not explained properly to people and they decide to refuse consent, then yes.  I can understand that with certain kinds of research, like genetic studies, people might be reluctant and you'd need their specific consent.  But when we're talking about understanding the mechanism of haemorrhage in hypoxia, for instance, that would eventually benefit everybody, that's different.  I really believe we should decree that, when people give consent for a postmortem, they should understand that the blocks and slides will be kept and they will be used for teaching and training and for research that has no implications for them personally. The same that applies to the tissues of a living person after surgery.

SA:  Is there a lot of debate in the pathology community about this kind of thing?

IS:  I think people are just kind of resigned, and despondent in many cases.

The rewards of the job

SA:  Tell me, when you do a postmortem are you still very curious about what you'll find?  Is it intellectually stimulating?

Each baby is somebody's child, and it is always emotionally engagingIS:  Yes it is.  Not every case is the same, and some are more intellectually stimulating than others.  But each baby is somebody's child, and it is always emotionally engaging, if you know what I mean.  You know you are doing something that's going to help somebody through their grief, even if it might be very boring for you.  The job has two levels of satisfaction: one that applies to every single case, and one that applies to the specially interesting cases where you say, "Wow, look what's happening here!"

For instance, last year we discovered a metabolic disease in a baby.  It was a coroner's case, but the parents then signed consent for further research.  They were Muslim parents, and they were really pleased that we ended up doing the case because we could pinpoint what metabolic disease it was and we could help them for the next pregnancy.

SA:  Was the problem obvious?

The satisfaction of it is that we helped a young familyIS:  From the outside it was obvious that something was wrong: likely to be a metabolic problem, but could be an infection.  But because the neonatologist couldn't sign the death certificate to say what this baby died of, even though they suspected it was a metabolic disease, they had to refer it to the coroner.  And the satisfaction of it is that we helped a young family.  Of course it could happen again, but at least it could be diagnosed while she's pregnant, and hopefully the couple will be able to have children who are not affected.  And because they were cousins we told them, "You've got to talk to your families.  Everyone in the family has got to know that if more cousins marry, this can happen."

SA:  Do you remember when it was that you first looked down a microscope?

IS:  When I was a child.  My father gave me his microscope as a present.  It was a single eyepiece.  I was eight or 10, I can't remember.  It was very exciting – all these cells and all these colours, and the fact that they were living things. 


SECTION 6

Old ghosts return

Interview is interrupted, then we resume as IS recalls a particularly difficult period in her working life.

I couldn't carry my dead with me.  I needed to be able to surviveIS:  At the end of 2003 I had three months off.  I had sick leave, and it all started because I had a row with the juniors and they complained about me.  It was a week when we had 11 babies who had died, and one of the juniors made a little nick in the neck of a baby when he was doing the autopsy.  Now when you do something like that, you put a little plaster on it and it's fine.  But I got home and I felt absolutely desperate.  I remember phoning the clinical director in tears and saying, "Somebody has to do something about this baby.  He has to have a plaster…."  And she said, "You must take the week off".  

SA:  What had the junior pathologist done wrong?

IS:  Oh, just a little cut in the neck by mistake.  But it was a very difficult time... I had just made a video with the Bristol parents to explain to other parents what a postmortem is, and I had been to a meeting in Norway where I presented the video, and I got attacked by a person who will remain nameless. The video was produced by the Department of Health and sponsored by the British Pathological Association, the Royal College of Pathologists, Royal College of Obstetricians, and all kinds of professional bodies.  But some of my colleagues were dead against it.  This was a time when, for some of them, parents were anathema.  So basically, some pathologists wanted the video withdrawn, and this added to the stress.   

They were surprised because I was cryingThe Twin Towers came down in 2001... [Until then] I had been extremely successful in putting all my dead friends into a drawer, closing the drawer, locking the drawer, throwing away the key, because I had to survive.  I was 21 years old [when the coup d'état happened in Argentina], I couldn't carry my dead with me.  I needed to be able to survive.  So I never properly grieved for my boyfriend, for all my friends, for losing my family, my country -- my life.  I never grieved, I just carried on.  Just like my father says, I'm like a cork: you push me down and I come back to the surface.  Alder Hey had started to move a lot of things in me, and then the Twin Towers collapsed and I was obsessed, I was really obsessed.  It was as if all my dead people came shouting back at me.  

At one point during the Alder Hey crisis I said, "I am going to go and talk to the Liverpool parents so that they realise that not all pathologists have horns and are horrible".  At the beginning they were all very confrontational -- there were lots of them -- and I said, "I do understand what it is to lose people, to experience the untimely death of people".   And I told them my story, because they were so immersed in their grief that they didn't realise other people might have had a traumatic history as well. They were surprised because I was crying. One of them came up and hugged me afterwards, and said, "I never thought I'd ever hug a pathologist."

You have to grieve.  Sooner or later you have to grieveSo anyway, I had all this grief coming back to me which the collapse of the Twin Towers had sort of enhanced, and I had to deal with it. Then this happened in Norway, at this meeting, and I was very stressed. Things escalated at work with some junior doctors and I basically just broke down.  I had 11 babies in one week, and when this small accident happened it was the last straw.  My boss said, "You mustn’t come to work next week." 

I took the week off, and I remember I went to this spa in London and had a day for myself.  I thought I was going to be fine after a week off, so I went back the following week, but when I walk into the department, I burst into tears.  I just couldn't go back to work.  I spent five weeks just crying.  The counsellor, George, was fantastic.   And my GP, and my husband, and Marisa, my au-pair at the time -- they were all extremely supportive. It was the counsellor who made me realise that I was grieving – that this episode was delayed grief for what had happened to me in Argentina.  Because you have to grieve.  Sooner or later you have to grieve.

During that period of stress before I took time off, I remember doing a postmortem on a child who had died of meningitis, and crying as I went to casualty to get my prophylactic antibiotics.  I just couldn't stop myself from identifying with the family.  It was the worst postmortem – he was a child more or less the same age as my son, eight years old at that time.  He had the same build, the same colour of hair.  

SA:  But up until then, and generally speaking now, you can find the emotional distance from your patients, can you?

I just couldn't stop myself from identifying with the familyIS:  I think it will always be difficult if it is someone close to my son’s age, and who sort of looks like him.

I did a case of a very sick child who was 11 years old, but he had been ill all his life and really looked much smaller.  He had lots of problems from the disease.  It was awful for the family, but for the child, dying was probably a kind of liberation and release.  So I don't have difficulty in those circumstances.  But it's these children who are completely okay one minute and then something happens to them – it's devastating.  

But you have to find a way.  If you are not stressed you can absorb that stress.  But when you are stressed to the limit anything could be the last straw.  Having my new colleague Liina, from Estonia, is absolutely wonderful, because we talk – about the cases, and about everything, and I think I have become a much better pathologist since she's come.  We discuss things; we bounce ideas.

When you are stressed to the limit anything could be the last strawI came back to work after three months, and it was incredible.  Being a paediatric and Perinatal Pertaining to the period shortly before and shortly after birth, variously defined as beginning between the 20th and 28th week of gestation and ending the 7th to 28th day after birth. pathologist you are very isolated, and people don't realise what work you do.  But those three months that I was away, they realised that they couldn't cope without me.

Looking back over life

SA:  The other day I read something that someone said and that appealed to me.  He said, "The only question that matters in the end, when you're looking back over your life, is: what impact did I have?  And how much fun?”

I am who I am because of the choices that I made and the decisions that I tookIS:  Yes! You never have enough fun, that's the thing!  Sometimes I think: why have I wasted time thinking I was ugly, or fat, or this, that and the other?  Why didn't I enjoy myself more?  Although I enjoyed myself quite a lot… I could have done things slightly differently, but I am who I am because of the choices that I made and the decisions that I took, and I'm happy with that.  

I have lots of things that are wrong with me:  I'm inpatient, I sometimes get really angry when things don't go the way they should, I get really cross with incompetence… But in the end I think I'm satisfied with who I am.  I can go to bed at night and think: I've done my bit.


SECTION 7

Postscript

I visit IS briefly in her office at the London Hospital. We start by discussing what her early experiences of loss and grief have meant to her in her work. She says that she feels it has made her better able to talk to people at the point of loss because she's been there herself – she's not considered patronising.

For orthodox Jews, everything has to be buried with the personIS:  I'll give you an anecdote.  This wasn't a patient who had died; it was a living child who had an eye removed because of a tumour.  The parents were very orthodox religious Jews, and after the eye was examined the father wanted it back.  I tried to explain to him why it wasn't a good idea.  He thought that after examining the eye we were going to throw it in the bin.  I explained that that wasn't the case.  The eye was preserved, it was well looked after, nobody was going to do anything with it that they didn't want done.  But no one knew if, for their own child's sake, they might still have need of it in the future.  I told them it wasn't that they wouldn't be able to retrieve the eye at some other period – because for orthodox Jews, everything has to be buried with the person.

I tried to explain things to the father from his point of view, because there would be no point in me saying, "What you believe is ridiculous!" To him it wasn’t ridiculous.  But I tried to explain to him, "Keep the eye in the department for a number of years.  If after those years it's not needed, you can always get it back; it can always be reunited with your child at a later date.  But you might need it for diagnosis, if his own children have got the same tumour, or another child in your family has the same tumour."  

There was a rabbi there too, and all our conversations went backwards and forwards between us and the rabbi, who was not a very flexible person.  In the end the father said, "Doctor, I know you are trying to help me and my family, but this is what my rabbi tells me and this is what I have to do."  I said, "Fine. If that's the case, at least you know. I've fulfilled my duty to explain to you. You know you could have the eye at any time; you know that it's not being disrespectfully treated.  You can have it."  

As these things happen, the tissue that was used for cytogenetics didn't grow, and six months or so after we gave the eye back, the person who does all these genetic studies with retinoblastoma came and said, "Look, we couldn't do our studies, could we please have some tissue from the eye?"  I said, "I'm terribly sorry, the family wanted the eye back; there is no eye, so you can't do the genetic studies".

I will remember this child's eye until I dieIn reasoning with the father, I tried to start from his point of view, because from my point of view, this was absurd... A piece of tissue.

Highs and lows

SA:  Tell me, Irene, what would you say have been the high points and the low points in your career?

IS: I will remember this child's eye until I die, because I think I failed.  I failed to pass on the message of what was important.  It was a retinoblastoma; the diagnosis was done; it was finished for that child, but there is a risk of his siblings having the tumour; there's a risk of his children getting the tumour.  We couldn't do a proper genetic analysis of the tumour, and there was lots of important information for the family that we couldn't give them.  

On the other hand, I recently had a very sad case of another Jewish baby who died of myocarditis, and the family allowed me to keep the heart slides to teach my junior doctors and students about the condition.  They allowed me to keep a block also in case we may be able to find out more about the cause of this particular case.  They know that when they want the slides and block back for burial sometime in the future they can have them. So I am convinced that, as the advert said, “It’s good to talk.”

These are really very rewarding momentsHigh points?  I remember the mother of this premature baby that died, and I did the postmortem.  She was a nurse.  A year later I got a phone call from her.  She asked if she could come and see me, and she brought this photograph of the baby that had died and of a new baby that had been born since. [Indicates a picture on her office wall]  I've got another one there of this woman who had an autoimmune disease and lost her baby.  What we found at the postmortem allowed the obstetricians to rescue the second baby who had to be born prematurely, but it was fine.  I've got a photo of that second baby aged two.  These are really very rewarding moments.

Every time you get a diagnosis right, it's a rewarding moment.  But I always have at the back of my mind that, yes, I did clinch that diagnosis, but it was unfortunate for the patient, and just what the family didn't want to hear.  So in a way you can't revel too much in your successes, can you?

ENDS

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