What price a child’s life?
It costs £300,000 a year to keep children like Tallulah in intensive care. But tragically many don’t ever get better. And, as a moving TV series shows, when to end treatment is an agonising dilemma for doctors — and parents
‘We’ve only held him a few times’
cannot thrive without surgery, is to withdraw care.
It is an agonising dilemma, and one over which the clinical team is initially split because, as Dr Wilson explains, the surgery is not a cureall. ‘Each bit of Mimi is fixable, but taken as a whole she’s not necessarily going to have the quality of life that her family would want for her.’
At an emotional meeting, the weeping parents make it clear they are worried their daughter has been — and is — suffering, and ask if the doctors will judge them if they decide not to go ahead with the tracheotomy. ‘Everyone has to die at some point,’ Dr Pappachan says gently. ‘Part of our role is to make this decision — if this is what you do — less difficult.’
‘It’s often not two good choices,’ adds paediatric intensive care unit director Dr Iain Macintosh. ‘It’s often suffering or more suffering, and those people who can rationalise that and say “stop in the interest of my child” — I think they make a brave decision.’
Mimi’s parents make that brave decision, and in sensitively filmed scenes, we see their daughter’s tiny little hand and wriggling arms as her lifesupport is withdrawn.
‘I can’t put it into words,’ says her devastated father. ‘It is just heartbreaking.’
It is a word that underpins this most poignant of documentaries, where the emotional toll on families — most of whom have been plunged into a bewildering world for which they are entirely unprepared — is made all too clear.
Among them are the mother and father of six-month-old Max who, like Tallulah, was born prematurely and who breathes though a ventilator.
‘At six months old he’s not done anything,’ his father Wayne says through tears.
‘He’s not drunk out of a bottle, never had a bath, we’ve only held him a few times. It’s just really hard. It feels like we have been robbed as parents, we have never looked after him, it just feels like we are useless.’
Their story is a rollercoaster; one of alternating hope and despair — sentiments entirely familiar to James and Rianna who, to date at least, have had a happier ending.
Their daughter’s tracheotomy was successful, although she remained in hospital for another 18 months, her desperately weak immune system leaving her endlessly vulnerable to infection.
While she is now home, she has a litany of problems and is unlikely ever to walk. She must be watched round the clock to ensure her tracheotomy tube does not get blocked, something which is undertaken six nights a week by a councilprovided carer to give her exhausted parents a break.
Is it any quality of life for Tallulah? James and Rianna, who now have eight-month-old baby Penelope, are in no doubt they were right to choose to do whatever they could.
‘She will always need lifesupport, but she is fully cognitive and she is a happy little girl,’ says James.
‘I feel like we were born to be her parents — I think that’s why we had Tallulah, because of the way we are, because we could cope. That’s why we are here at home with her now because we took that path.
‘Everything you envisage about having a child, well that all goes out the window when something like this happens. But you just have to get on with it. It may not be the family we envisaged, but it’s our family.’
The first episode of My Baby’s Life: Who Decides? is on Channel 4, 9pm, tomorrow.
To HER doting parents, twoyear-old Tallulah Drew is every inch the happy little girl they imagined she would be before she was born. ‘She loves music, she has her favourite television programmes and I’ve just taught her to do some pretend boxing which is her new favourite thing,’ her father, James, explains with a smile.
Tallulah is certainly a fighter. Born at 29 weeks’ gestation and weighing just over 1 lb, she hovered on the cusp of life for months, sustained by a ventilator and subsequently by a tracheotomy tube in her throat, through which she breathes to this day.
The first two years of her life were spent in a hospital bed, and she now requires round-theclock care at the family’s home in Gosport, Hampshire. Her long-term future is uncertain, although her parents are grateful to be discussing the prospect at all.
‘If she had been born five years ago, she would have been dead,’ James, 27, acknowledges. ‘She wouldn’t have had the machines to keep her alive as they didn’t have this sort of technology then. We’re just very glad they do. Although we could never have prepared for this, she has such a big personality and she has brought us a lot of joy.’
Certainly, the extraordinary advances in medical technology mean the lives of Tallulah and others like her are able to be prolonged even if their complex problems cannot be cured — in turn setting up heartbreaking and complex dilemmas for their families and the doctors who treat them.
They are unique predicaments and ones into which television viewers are afforded a rare insight courtesy of a sensitive and thoughtprovoking, two-part Channel 4 documentary filmed in the intensive care unit of Southampton Children’s Hospital. over several months it charts the lives of many desperately ill children — among them Tallulah — which hang in the balance every day.
At the documentary’s heart, meanwhile, lies one, central question. What cost a life?
It’s a deeply complex question, lying at a crossroads where ethics and religion jostle alongside hope and expectation.
on paper, at least, the answer has a number attached to it. on average, a child patient on life support in one of the paediatric intensive care unit’s 16 beds costs the NHS between £250,000 to £300,000 a year, a total that continues — and can rise to half a million — if the patient requires similar care at home.
And behind this lies another statistic, as the paediatric intensive care unit’s clinical lead Dr Peter Wilson explains.
‘Twenty per cent of children use up 60 per cent of intensive care resources — and a large percentage of them will not survive,’ he says.
It means that in an increasingly cashstrapped NHS there are tough decisions to be faced. ‘I have surgeons coming to shout at me all the time about not being able to get their children into intensive care, that they’re going to die because their beds are being blocked by someone like this [who may not survive],’ says Dr Wilson.
‘Those are the knock-on effects that I think we are going to have to start to debate as a society. It doesn’t make one life more important than the other — it just means in a resourcelimited environment, how do we make really tough choices correctly?’
The reality, of course, is that when it is your baby fighting for life, the instinct is to cling on to anything that may give them a chance of a meaningful existence.
Ever more so in recent years, according to Dr Wilson, who says that instances of parents asking to withdraw care from their child have become increasingly rare.
It’s an impulse that has driven Tallulah’s parents James and his fiance Rianna, 22, since the day, twoand-a-half years ago, when they were told Rianna would need an immediate caesarean section 11 weeks before her due date to save their baby’s life.
‘We thought we were just going to have a general scan. I came along from work in my lunch break as we had no idea anything was wrong,’ says James, who manages a car showroom. ‘We knew Rianna’s bump was small, but we are both quite small so it seemed natural we would have a small baby.’
In fact, Tallulah was not developing properly in the womb. Her only chance of survival was an immediate delivery. ‘I started crying,’ Rianna says. ‘I honestly wasn’t prepared for that, I didn’t really have time to take anything in.’
Within barely an hour of them arriving at the hospital, their daughter they spent the days devotedly at their daughter’s bedside and at night returned to a small nearby flat provided by a charity.
It’s a routine they stuck to for twoand-a-half years.
Yet, as the months went by, it became clear that the hospital’s attempts to wean their daughter off oxygen were not working, leaving her parents with a heartbreaking predicament.
‘Shortly before her first birthday she lapsed into a coma and was very ill,’ says James. ‘They couldn’t do anything further with her oxygen. Two of the consultants said they should withdraw care, one said they thought a tracheotomy would give her a final chance — but it was by no means guaranteed.’
They decided to take that final chance — a choice James insists was driven by what they had witnessed in their daughter.
‘She’s got more strength than both of us put together. She’s the one who has dictated our decisions,’ he says.
‘I would happily have turned the machines off if there was going to be endless pain — Rianna and I would never want her to suffer. But I’d seen her playing with stuff, interacting, smiling, and I wasn’t prepared to believe that there couldn’t be some quality of life for her.’
As Dr Wilson says, it is a rare parent who will not seize even the slimmest of chances.
‘I think it is a very brave parent who can say: “We’ve had enough. We need to stop,” ’ he says.
‘I just don’t think most families can do that and I don’t think we should be asking them to do that. We as clinicians should make those difficult decisions, that’s what we get paid to do especially in these really difficult areas on the edges of life.’
It’s one reason these cases are discussed at an ethics committee which meets every month, comprised of medics, a lawyer, a philosopher and a vicar.
‘These things are too difficult to make decisions about alone — we need a broader church of opinion,’ says Dr John Pappachan, a specialist in anaesthetics and paediatric intensive care medicine — and himself a father of two. ‘It’s a useful go-to forum to discuss issues that are not black and white.’
And such cases have increased in number, he says, due to the advances in technology applicable to eversmaller children, but also because the expectations of their families have changed.
‘The advent of the internet and social media means the amount of information families have access to has increased,’ he says.
‘It’s a good thing in one sense as it has put the conversations between parents and doctors on a more level footing, but it has also changed expectations.
‘Yet the reality is that often we can only estimate the future — we can’t predict it — so every decision has an element of risk for the children and for the family.’
Risks that the parents of baby Mimi have had to endlessly calculate since her premature birth eight months prior to the arrival of the documentary cameras.
Mimi (not her real name) has heart problems needing surgery, but this requires her to put on weight: she still weighs just 6kg, and must be a minimum of 10 kg.
Ensuring weight gain requires a tracheotomy, an invasive procedure to which Mimi’s parents — who, fearful of coming under attack from social media, have chosen not to be identified — are instinctively opposed. The alternative, as Mimi