Is that “routine” operation far riskier than you thought Mother tells of “everyday surgery” that went horribly wrong for her three-year-old son
When the consultant chatted to my husband and I about the risks involved in a routine ear operation for our son, we barely took the information in.
Louis, then three, had glue ear — a common childhood ailment which meant fluid was pooling behind his ear drum. It wasn’t life threatening, but it meant he couldn’t hear properly, causing a delay to his speech.
Making a hole in the eardrum and inserting a grommet — a small thin plastic tube — would help drain the fluid and improve his hearing.
The unlucky minority: Lucy Elkins and son Louis, who suffered lasting damage
Tens of thousands of these operations are carried out each year in the UK and things go wrong only in around two per cent of cases, the surgeon said.
To us, this didn’t sound risky at all. We were focusing on the potential benefit — Louis finally being able to hear and respond to something we said.
At the time his hearing was so bad he didn’t answer unless you bellowed and his vocabulary was limited to a handful of words.
In noisy situations such as at the nursery he would remain mute because all he could hear was the general drone of background noise — he couldn’t pick out voices.
To the surgeon — who spends a lot of time on infinitely more complex cases — whether we should allow Louis to undergo the procedure warranted little discussion.
The surgery to make a hole in the eardrum and insert a plastic tube, pictured, usually occurs without complications
He went through the risks a little like an air stewardess runs through the safety card on an aircraft, just listing possibilities without any real suggestion that any mishap would happen to Louis.
So in February 2007 we signed the forms and allowed our son to have the operation. Now as I insert Louis’s hearing aids each morning (even with them, he can’t hear his teacher unless she talks to him through a microphone) I wish we’d been more focused on the potential hazards.
A two per cent risk of complications sounds small, but it isn’t when your child falls into that group — as some children inevitably will.
After the surgery Louis heard properly for around two months. Then the grommets fell out and the holes left in his eardrums did not heal.
In fact they led to repeated ear infections that wouldn’t respond to antibiotics.
The infections persisted for months and ate away at his eardrums. As a result he’s been left with such large holes in both eardrums that whenever we go for a check-up medical students get called in to look in horror at them.
All this has affected his hearing as much as the glue ear did, so for the past three years he has worn hearing aids — which he hates.
Louis has to wear ear plugs whenever he has a bath or goes swimming because a single drop of water could carry bacteria deep into the ear and cause an infection.
Despite our best efforts he gets around four infections a year and I am afraid to say he’s almost used to the pain.
The holes will never heal naturally so Louis will need another operation in two years or so to have a skin graft over the ear drum. The success of that surgery, as I now truly appreciate, is not guaranteed.
There are risks involved with virtually any medical treatment and knowing how to assess if the benefits outweigh the chance of side effects is a huge challenge.
Understanding risk in percentage terms is very hard — you have to try to explain to patients what it means to them as an individual,’ says Professor Anthony Narula, a surgeon at the Imperial College Trust and a council member of the Royal College of Surgeons.
‘For example, some of the operations I do have a one-in-100 risk of complications.
‘What I say to patients in this case is there is a one-in-100 risk of unpleasant consequences and if you are that one patient in 100 then you will have to live with that consequence 100 per cent of the time.
‘The fact that the previous 99 people who underwent the operation did very well will be of no consolation to you.’
Ear infections are common amongst toddlers and young children but are often resolved
With a life-or-death situation it is perhaps an easier judgment to make but with elective procedures, such as Louis had, the decision is not so clear cut.
‘I think that is why it is helpful to have a cooling off period before a treatment begins or they have surgery so patients can go away and consider their options,’ says Professor Narula.
However, there is a tendency for medics to gloss over the risks because in their view it’s better that the patient has the treatment, suggests Philippa Luscombe, a medical negligence lawyer for the firm Penningtons.
Every year this one firm is contacted by several hundred patients who feel the risks were not properly explained.
‘The issue often is that the surgeon does warn of complications but not in great enough detail,’ she says.
‘For example, a surgeon might say that there is a risk of a bleed during an operation — but not that the bleed could set back recovery from six weeks to six months, which would be hugely significant if you need to return to work for example.
‘When a surgeon is explaining the risk of complications they are thinking: “Well if X, Y or Z happens I can remedy that with further surgery.”
‘That is routine to the surgeon — but that is not routine for the person who has to undergo it.
‘For them it means another general anaesthetic, more time in hospital and time away from work or their family.’
Patients who suffer complications recognised as standard risks of their treatment may find they have no legal comeback.
Philippa Luscombe explains: ‘Often we cannot progress with these cases because the patient signed the consent form to the operation and they would have had the operation irrespective of the risk, but the fact that we have so many inquiries is evidence of a significant breakdown in communication between surgeons and patients.’
This rings bitterly true for Shaun Nicholls, a 40-year-old builder from Ipswich. He was left to raise his baby daughter alone after his fiance, Vikki Dixon, died five years ago following a routine operation.
Vikki, then 38, was admitted to hospital just days after giving birth to their daughter, Evie, with excruciating abdominal pains.
Vikki, who was otherwise fit and well, was told she had gallstones and would need her gall bladder removed. It is a common procedure, but the NHS website warns there is a five per cent risk of complications. Vikki had the worst possible outcome.
Criticised: Surgeons who train at the Royal College have been told that they must take more time to highlight the risks of surgeries
During the operation, small fragments of gallstones slipped into the bile duct, blocking a tube to the pancreas.
This led to acute inflammation of the pancreas. Digestive fluid leaked into Vikki’s abdomen and started to eat at her organs. She died after 221 days in hospital.
‘What makes me so angry is that this surgeon said it was a simple in-and-out procedure and that she would be home the same day,’ says Shaun.
‘The risks weren’t put into percentage terms. They just said that all surgery has risks and with Vikki being in pain, we didn’t think much more about it.’
Two weeks after the operation, the surgeon told Shaun that the operation was so simple he’d let his junior do it.
Shaun believes the couple were not given enough detail about what can go wrong. ‘As a result I have lost someone I loved very much and my daughter has had to grow up without her mother.’
He adds: ‘My advice to anyone having any kind of operation is to ask for as much detail as you can.’
“It”s not just surgical options that throw up these dilemmas balancing risk of surgery or treatment going wrong versus continuing with an ailment or disability”
A medical practitioner is duty bound to explain all aspects of a treatment, explains Anna Gallagher, a readerof nursing ethics at Surrey University.
‘Theyshould explain what the intervention involves, what are the risks, whatare the benefits and what are the alternatives. However, there is some variability in how well this information is given.
‘There has been some discussion about establishing a check list of questions for patients to ask to help them make an informed choice, but this has yet to be done.’
But it is too simple to lay the blame entirely on medics. As Professor Narula explains: ‘Lots of research has found that, during a consultation, patients often don’t absorb everything their doctor tells them.
‘Consultations can be very stressful for patients and that can lead to loss of detailed recall.
‘One thing to remember is that in this country NHS surgeons get paid the same whether they do an operation or not — which I think is a good system — so they have no ulterior motive for putting someone through an operation,’ he adds.
It’s not just surgical options that throw up these dilemmas balancing risk of surgery or treatment going wrong versus continuing with an ailment or disability.
Cancer treatments, for example, can cause major concern for some people. Although here it’s not so much that people don’t take in the risks — rather they focus on them almost too much.
‘Most people need to be reassured about the risks of chemotherapy,’ says Dr Roshan Agarwal, an oncologist at Imperial College London.
‘Young women especially are anxious about the risks to their fertility and the idea of losing their hair. Some are so nervous of the treatment that they will turn it down initially — even though it is lifesaving treatment.
‘It would be wrong to say that it is a walk in the park, but people are so terrified by everything they have heard about chemotherapy and they don’t need to be.’
Everyday treatments from the GP also involve thinking about the risks versus the benefits.
‘The problem is that the benefits and side effects of drugs vary from person to person — and that is why starting on any treatment needs to be a personal decision which takes into account factors like age, lifestyle and other underlying conditions or medication,’ says Dr Maureen Baker of the Royal College of GPs.
‘And making the decisions about whether to take some drugs, such as statins, can be hard because you don’t see an improvement — the patient won’t know it has done them any good until ten or 20 years down the line when they haven’t had a heart attack.
‘I recently had a 73-year-old lady who did a cardiovascular risk assessment and came out with a risk assessment of 20 per cent, so according to guidelines she should go on to statins.
She was not at all sure she wanted to go on to statins (because of the risk of side- effects such as muscle weakness). She went away to think about it and talk to her friends.’
There are similar issues with drugs for arthritis, according to Arthritis Care. Patients may risk getting acid reflux from taking a non-steroidal anti-inflammatory for pain — ‘but we will weigh up that with the benefits, for example, of being able to go shopping or playing with their grandchildren,’ says Jo Cumming, the charity’s helpline manager.
‘These decisions are very personal and unique and need to be talked through. The problems we hear are that GPs only have ten minutes if you are lucky to spare for each appointment.
‘Then if you go to see a consultant you might have more time, but they often talk in a way that is hard for a lay person to understand.
‘Also if someone is given a diagnosis at the same time as they are offered a treatment they often find it hard to take in all at once.
‘Charities like ours can help to provide people with further information and talk through their options. What we can’t do is to make a decision for them.’
The other week a friend called to say her daughter was going to have a grommet operation. She was so full of hope that I felt mean detailing all the issues the operation had caused for Louis.
I am desperately hoping that her daughter won’t be one of the unlucky ones. The problem is even if it is a success for her, for another child somewhere it won’t be.