Ciaran was born at just 25 weeks. From the moment of his birth, his parents, Chris Kane and Charlotte Lamb, spent almost all their time at the hospital. They stood vigil at their tiny son's cot, trying to grow their baby, who couldn't metabolise milk, with love instead. Three months later, Chris and Charlotte were being asked to make the hardest decision of their lives. Ciaran's consultants were talking about withdrawing intensive care treatment and taking him off the ventilator. Twice before, his condition had been critical, and twice before he had pulled through. His parents hoped he could do it again. But what if he couldn't? Chris paced the empty hospital corridors in the early hours of the morning. Charlotte stared at the walls of their tiny parents' room. Both of them willed Ciaran to defy the doctors, and start to improve.
In the UK we have the highest rate of premature births in western Europe. We also have one of the best survival rates for babies born at the extremes of prematurity. The legal definition of viability has dropped from 28 weeks to 24, and a new generation of babies has emerged, born at 23 to 25 weeks' gestation, who now have a 50/50 chance of surviving. The corollary to this success is the growing number of parents faced with the dilemma of whether to continue intensive care on their babies.
With Ciaran's condition slowly worsening, Dr Wilf Kelsall, the consultant in charge of Addenbrookes neonatal unit that week, called a meeting with the family to explain how ill Ciaran was. "You reach a point where you've tried everything, every drug, every procedure, and the baby is not making progress," he says, "and instead is effectively deteriorating. This is very hard for parents to hear. And it's a huge turnaround for us to change a course of treatment when we have fought for weeks and weeks to keep a baby alive."
By now Chris and Charlotte were emotionally and physically spent. In the time they had been on the neo-natal intensive care unit (NICU), they had watched a three-storey ward get built outside the window. In more optimistic moments Charlotte compared notes on the fittest builders with the nurses, while Chris took the brunt of friendly staff teasing. Both had given up their normal lives to fight for their baby's life. They barely left Ciaran's side as he rallied, then dipped, improved, and then had another setback, in his long and difficult neonatal course.
On the day of the decision Charlotte looked numb. Chris, a support officer for the Metropolitan police, said he had never felt so powerless in his life. With more than 20 family members gathered in the small communal space on the NICU, the moment of withdrawal slid by almost silently. Chris and Charlotte whispered something to each other and then disappeared into the eight-cot unit that Ciaran had lived in since the earliest hours of his birth.
There had been many plans for the afternoon: to take Ciaran, without the wires and tubes that kept him pinned to a bank of machines, down to the hospital concourse in a buggy. Maybe to go outside and breathe some fresh air for the first time, if the rain ever stopped. "We wanted him to be like a normal baby, in a pushchair, out walking with his mummy and daddy. We wanted pictures of him with the whole family there," Charlotte said.
But within half an hour it was all over. Ann, the nurse who had washed Ciaran with great tenderness and dressed him in a new pair of denim dungarees that morning, and who had then taken out the tube that connected him to the ventilator, called the grandparents into the Quiet Room, where Chris and Charlotte were holding Ciaran, to pay their last respects.
For a short while afterwards the corridors and hallways of the unit were overtaken by small knots of grief as family members clung to each other and searched for consoling thoughts.
The atmosphere on the NICU changed in the aftermath of Ciaran's death. Chris and Charlotte were hugely popular. They had been there so long, they were almost part of the unit. All the staff recognised how torturous it had been for them to withdraw intensive care. Ann, who nursed Ciaran through the day, said, "I don't know how they did it really. It's the bravest decision a parent can ever make." According to Dr Kelsall, who supported Chris and Charlotte through Ciaran's last week, everyone pays a price when intensive care is withdrawn: "There's so little privacy on the unit. Parents have to endure the most harrowing decision of their lives without very much protection from the world. And it affects other parents, too; to see a bed that has been occupied by a tiny baby suddenly vacant impinges hugely on them as well."
When Ciaran was born, the doctors put his gestation at 25 weeks, but Charlotte believes he was actually younger than that because his eyelids were fused. Unless conception takes place in a Petri dish, most obstetricians will admit that counting the weeks is an inexact science. Twelve years ago, 28 weeks' gestation was the limit of viability and the upper limit of termination. But with sophisticated advances in breathing apparatus, better intravenous lines and drugs that can mitigate some of the critical effects of extreme prematurity, younger babies are now surviving. Most neonatologists will say that we are currently at the edges of medical intervention because everything just gets too small. Even if the brain and the lungs - the danger areas for premature babies - are functioning properly, the blood vessels may be too small to insert lines into, the skin isn't fully impermeable, so it leaks, and the inner organs are not sufficiently developed to function.
However, give medicine a challenge, especially one that involves highly technical equipment, and it will rise to it. Currently the legal definition for viability in this country is 24 weeks, although a number of 23-weekers have survived and thrived. And in Japan, neonatologists will ventilate and resuscitate babies as young as 22 weeks, regardless of their potential developmental outcome.
Dr Kelsall is everything you might hope for in a neonatologist. Intensely humane, he is also lively and occasionally self-mocking. After nearly 20 years in paediatrics, he is the first to admit that the technical abilities of his profession can produce uncomfortable dilemmas. "We can perform heroic medical interventions, and sustain life in the smallest and sickest babies, but by far the hardest part of our work is knowing when to stop intervening, when to help parents accept that further treatment is futile. Sometimes it's easier for us, as professionals, to just carry on, regardless of the toll the treatment is taking on the baby and the family."
Experienced neonatal consultants never tell parents what to do in these situations. Both the law, and common practice, require that responsibility for the final decision lies with the parents, but consultants do give a medical recommendation that the parents can accept or veto.
After 10 years at consultant level, Dr Kelsall feels strongly that it is up to him to shoulder the burden of guilt for the clinical outlook of the baby. "I don't believe parents should be left to struggle with the thought that their baby might have been the one-in-a-million child. Sometimes, as consultants, we have to admit what some might call failure.
"I feel that withdrawing treatment is not incompatible with my religious beliefs, because it comes down to preserving dignity for the baby, and for Mum and Dad too."
Though he has been party to such discussions on a number of occasions, Dr Kelsall admits that they never get any easier. "Sometimes you go on duty with a heavy heart when you have a baby on the unit who is sick and unlikely to get any better. You feel pretty wrecked at the end of a week on service if you've had that situation to deal with."
For Chris and Charlotte, there is consolation in the knowledge that they made their decision out of overwhelming parental love. As Chris puts it: "It isn't easy to understand. We loved him so much that we didn't want to lose him - but we loved him too much to keep him suffering as well. We did what we thought was best for him."
