The pathologist challenging shaken baby syndrome
In 1976 Irene Scheimberg fled Argentina when the military regime began arresting and killing her friends, experiences that have made her extra sensitive to injustice. Today, as a paediatric pathologist in the UK, she is prepared to challenge it whenever it arises, whether it be shaken baby syndrome or the controversy over retained organs at Liverpool's Alder Hey Children's hospital, she tells Sue Armstrong
What kind of family did you grow up in?
My grandfather was a civil rights lawyer and both my parents are doctors. It was a family in which you had to do something for society.
But you had to leave Argentina?
In 1976 there was a coup d'état and a military dictatorship took over. It was the most brutal in Argentina's long history of military dictatorships. Lots of my friends were "disappearing" and my ex-boyfriend Carlos - a very recent ex and somebody I really loved - disappeared. His body was found in the river with marks around the wrists and ankles. I went to bury him, and 10 days later I was on a plane to Spain. The police or army had been to check on his friends and so I had to leave.
How have those experiences affected your philosophy of living and the work that you do?
They have affected me in two contradictory ways. On the one hand I think I 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 baby, but the toddler, the child, the pimply adolescent, the wedding and the grandchildren. I can identify with that. It's the loss of the future that is so painful. On the other hand my experience makes me intolerant of people who complain about minor things. It makes me want to say, "Come on, get on with life."
What made you decide to study pathology?
Because my parents were doctors, medicine was always part of the equation. Why pathology? When I came to the UK, I didn't speak English well enough, so I chose something that didn't involve much contact with patients. I always liked pathology because it's about getting to the bottom of things - trying to understand the mechanisms of the disease. I found paediatric pathology fascinating and later I also started doing perinatal pathology - which relates to diseases in the womb until shortly after delivery. The two are very different. In paediatric pathology you deal mainly with live children, trying to help keep them healthy and alive. Perinatal pathology is about death and loss.
As a pathologist, how much are you aware of the human being behind the image under your microscope?
I know there is a person, in my case a child, on the other side of that slide, whether I meet the child or the family or not. But I like seeing the patient. I like not to lose this human contact, because for me that's what medicine is all about.
The main reason to do a post-mortem is for the family, to tell them what happened. When a child dies the parents tend to feel guilty - the child's death is like a failure to protect. So it's important that there is a professional there to tell parents that this would have happened no matter what they did. The post-mortem is sometimes the first time that that child - particularly if it's a young baby - will be examined by a doctor. We are that baby's doctors. 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.
Can you give me an example of how you have assisted someone to have a healthy baby?
There was a mother who had an autoimmune disease and lost her baby. What we found at the post-mortem allowed the obstetricians to rescue her second baby. I've got a photo of that second baby aged 2, and these are very rewarding moments.
Post-mortems are an important element of teaching too. Medicine doesn't only progress via big Nobel prizewinning discoveries. 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.
One of those "bricks" you're working on at the moment is shaken baby syndrome, is that right?
The problem with the shaken baby controversy is that it's very dogmatic. If I don't accept religious dogma (and I don't), I'm not going to accept scientific dogma. If it's there, it can be proven. I do recognise that some adults are capable of doing nasty things to children, but I'm uneasy about people saying: "Oh, if a baby has got subdural haemorrhage (SDH), retinal haemorrhage and brain swelling, it can only be shaken baby syndrome." I'm trying to find out the mechanism of bleeding in the brain in babies who have not been shaken.
Have you any clues as to what the mechanism causing "shaken baby" symptoms might be?
I'm exploring all sorts of theories. My colleague Marta Cohen from Sheffield Children's Hospital and I have just published a paper with observations of our autopsy work on fetuses and babies over the last couple of years. We selected 55 cases - 25 late third trimester fetuses who died shortly before delivery and 30 newborns - who had haemorrhage within the membrane that covers and separates the two halves of the brain, and compared this with the level of brain hypoxia, or oxygen deficiency. We knew that none of these cases could possibly be inflicted trauma. We found that all those with severe brain hypoxia and half of those with moderate brain hypoxia had SDH. This is the same type of SDH that some people describe as specifically indicative of shaken baby syndrome. A similar pattern of haemorrhages has been described in the retinas of newborn babies dying of natural causes. We think that in these cases the haemorrhaging is caused by the hypoxia.
My concern is that by relying on this famous triad of symptoms - brain hypoxia, SDH and retinal haemorrhages - to diagnose shaken baby syndrome, when there's no evidence of inflicted trauma, we may be sending to jail parents who lost their children through no fault of their own. As scientists it's our duty to be cautious when we see the triad, and to take each case on its merits. We owe it to the children and their families.
Do you find that getting consent to keep autopsy material for research and teaching is difficult, particularly since Alder Hey?
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. People are part of society, they benefit from what other people are putting into that society. When I ask for consent I tell people: "The slides that I have taken for the diagnosis to try to help you can be discarded after diagnosis. Or they can be used to teach other people that will continue my work." When they say yes, they feel part of the society and they are fulfilling their duty. Some say no because of intense grief or because nobody explained things properly to them.
How do you deal with the emotional challenges of your work?
Sometimes it is very difficult. When I do a post-mortem I prefer not to see babies when they come to the mortuary dressed. I need to detach myself, and I know I wouldn't be able to cope if I see the baby dressed.
It helps me to think that I'm helping people at probably the worst time of their lives. I think this has a lot to with my past, with the losses I experienced when I was in my 20s. Somehow I can identify with what people are going through and that's important to me.
Irene Scheimberg studied medicine in Argentina and Spain then trained as a paediatric pathologist at Great Ormond Street Hospital for Children, London. She is now a consultant paediatric and perinatal pathologist at Barts and the London NHS Trust. This is an abridged version of her interview with Sue Armstrong in A Matter of Life and Death: Conversations with pathologists (Dundee University Press, 2008).