Charlie was born after 24 weeks and two days inside his mother's womb. That is barely half the normal 40 weeks, and at the outer limit of viability for human life. His lungs were not working, his skin was translucent and his brain was half-formed. He spent the first six months of his life in hospital — four of them on a ventilator — while he suffered repeated crises, contracted meningitis, had a shunt inserted to drain fluid from his brain and struggled to live.
It was a dark time for his parents, Sarah Hyatt-Williams, now 36, a marketing consultant, and her husband, Tristan, 42, a copywriter. "You suddenly find yourself in hospital, surrounded by doctors and nurses telling you your baby is about to be born. They are reeling off statistics about its likely survival and what the risks of disability are if they try to save it. It is not real and you can't take it in," Sarah says.
Each year, thousands of babies are born extremely premature like Charlie in the US, clinging to the edge of life. The numbers are growing — admissions of babies born at 22-25 weeks are up 44 per cent in a decade. In each case, doctors and parents wrestle with an agonising choice: should everything be done to save them, including aggressive intervention, but with a high risk of their suffering long-term disability? Or should they be kept comfortable and cared for and nature be allowed to take its course?
It is a question that has pro-fessional ethicists scratching their heads. But Sarah and Tristan, like all parents in their position, did not have time to think. After an uncomfortable night, Sarah had woken with pains in her abdomen. She called Chelsea and Westminster Hospital and was told to come in for a check. She thought she might have a bladder infection and packed her papers for a work meeting, expecting to travel on to her office with a marketing company.
Instead she found herself lying on a bed with the foot end tipped up at 30 degrees in a desperate attempt by doctors to delay the birth. Specialists were summoned, incubators wheeled in (she was expecting twins), monitors hooked up and the full force of modern technological medicine unleashed.
Tristan says: "I remember this neonatal registrar coming in — she was quite abrupt. She says: 'This is a very bad situation. Your baby is going to be born at 24 weeks plus two days. Fifty per cent do not survive to leave hospital and among those who do survive only 12 per cent have no disability.' The take-out message was: don't get your hopes up. They may not survive the birth and even if they do, they are highly likely to be disabled."
Sarah says: "I wanted it to be over. It was a bad dream. The likelihood of having a healthy baby seemed so remote I didn't want them to come out alive. That would have taken it out of our hands. It would have been awful but then we could have moved on."
By now, Sarah's contractions were established and there was no turning back. The doctors asked whether they wanted the babies resuscitated should they come out in poor condition. They said no. An hour later, the babies were born — one swiftly following the other.
Highs to lows
As they took their first breath, both babies cried. For most parents, that is a moment of joy, signalling the arrival of a new life. But not for Sarah and Tristan.
"It was a nightmare. It meant, 'This is real — it is really happening.' The doctors said, 'You've got a lovely boy.' Then a bit later, 'Now you've got a lovely girl.' It was impossible to take in," Tristan says.
The babies were whisked away to intensive care and they did not see them for 24 hours. Their first visit was not reassuring. In place of the fat, glossy newborns whom parents typically coo over, their babies looked ancient, withered.
"Their skin was translucent, they were hooked up to machines and they were so tiny. You can't imagine it's a real baby. I felt negative. I still wanted it to be over — I didn't wa