Premature births: A miraculous survival story
Published: February 21, 2007 | 5624th good news item since 2003
Amillia Sonja Taylor was born after 22 weeks, weighing less than a bag of sugar. Doctors gave her little chance of life. But now she has been allowed home.
Her tiny transparent feet, covered in gelatinous skin, look like those of some aquatic creature. Her chest, festooned with wires and tubes, covers a heart that pumps up to 80 times a minute. She is the world’s most premature baby known to have survived and, after four months in hospital, she is going home.
Born at 21 weeks and six days gestation, barely half the 37 to 40 weeks normal babies spend in the womb, Amillia Sonja Taylor weighed less than 10 ounces, less than half a bag of sugar. She measured just over nine inches long.
Her doctors at the Baptist Children Hospital in Florida did not hold out much hope. “We weren’t too optimistic but she proved us all wrong. She is truly a miracle baby. We didn’t even know what a normal blood pressure is for a baby this small,” William Smalling, a neonatologist, said.
Premature births as extreme as this carry high risks. Amillia has experienced respiratory problems, a very mild brain haemorrhage and some digestive problems, but none of the health concerns are expected to pose long-term problems, her doctors said. During two months in an incubator, she had plastic surgery to repair an ear torn during delivery.
“We can deal with lungs and things like that but, of course, the brain is the most important,” said Paul Fassbach, a neonatalogist. “But her prognosis is excellent.”
Today, Amillia has grown to a healthy 4lbs, still barely half the weight of a newborn baby, and is 25 inches long. Conceived by IVF, she is the first child of Sonja and Eddie Taylor, from Homestead, Florida, and already the centre of their world. “I am still in amazement. I wanted her to have a chance and I knew in my heart that she was going to make it,” Mrs Taylor, 37, said. “It was hard to imagine she was going to get this far but now she is beginning to look like a real baby. Even though she is only 4lbs now she looks plump to me.”
Premature babies enter the world with immature organs and skin, under-developed lungs and fledgling immune systems. Their first few months are a roller-coaster – doing well one minute, their lives in the balance the next – yet survival rates have improved dramatically. Ten years ago, three-quarters of babies born at 25 weeks died. Now less than half do so.
Amillia’s story is testament to the achievements of modern medicine. But it is also extremely rare. Even today 99 per cent of babies born before 23 weeks gestation die. Less than one in five of those born before 24 weeks survive and of those two thirds have moderate or severe disabilities.
Medical advance has thus created an ethical dilemma. Is everything being done that should be for these babies or is too much being done because it is technologically possible? Progress in neonatal medicine has increased the options for doctors and parents but, because of the risks of death or disability, has made it increasingly difficult for them to know the best thing to do.
There is a worldwide boom in premature babies. The US Institute of Medicine warned in a report last year that premature births were soaring, by almost a third in the last 25 years, putting increasing pressure on health and education services. More than a quarter of babies born before 35 weeks will require help in school and a quarter of those born before 25 weeks have severe long-term problems.
The finding was backed by Danish scientists who reported a 22 per cent rise in premature babies between 1995 and 2004. In the UK, specialists say a similar increase is likely to be under way, where there are about 45,000 premature births a year.
Older mothers and increasing obesity are among the factors thought to be driving the trend. The growth of IVF, with its high rate of twin births which have an increased risk of being born prematurely, is also a contributor.
Greatest concern surrounds the growing number of extremely premature babies, of 23 and 24 weeks gestation, who are at highest risk of suffering severe long-term impairment. At birth, every feature of their existence presents a challenge.
Visit any neonatal intensive care unit and you can see the struggle they face to survive. The doctors operate at the limits of medicine, and their newborn patients cling to the edge of life. The babies have lost the protection of the womb, and with warmth, oxygen and nutrients, the doctors try to substitute for its protective embrace.
Premature babies lack the subcutaneous fat that develops in the last month of pregnancy and gives full-term babies the fat, glossy look of the newborn. Their skin hangs loose in wrinkles and folds, as their lives hang by a thread.
Nurses drip expressed breast milk through tiny tubes and check monitors attached to scrawny chests. Alarms beep constantly, as traces record heart rate, breathing, oxygen level and blood pressure, while ventilator pipes gently vibrate. The consultant ward round is dominated by discussion of “creatinine levels”, “neuronal migration” and “immunoacids”.
That any of these babies survive at all is a miracle of modern medicine. That half of those born at 25 weeks grow up and go to primary school without any significant disability, as revealed by research, is a triumph.
But for the other half it is a different story. They and their parents face a heart-rending struggle in the face of disabilities that can include cerebral palsy, severe cognitive impairment, blindness and deafness.
Some specialists point out that while the attrition rate at these gestational ages – below 25 weeks – is very high, it is lower than it was and improving all the time. A decade ago, babies born at 28 weeks had similar outcomes to those now born at 24 weeks. That demonstrates medical advance and there is no reason why it should not continue.
Others say that though the successes are impressive, the price of failure, for the parent of a child who grows up profoundly disabled, is too great.
A spokeswoman for Bliss, the premature baby research charity, said yesterday: “Amillia’s is an amazing story and an astounding success. But she is in a minority. Successes like this rarely ever happen and there are many cases where things don’t work out so well. We hope Amillia will have a happy and healthy life. But we need to avoid giving the impression that this is the norm.”
Last November, the Nuffield Council of Bioethics ventured into the ethical minefield by publishing guidelines on when to provide intensive care to extremely premature babies, those born below 26 weeks. “Doctors have gained the capacity to prolong the life of newborn babies and the question is whether they should always do so,” said Professor Margot Brazier, who chaired the working party that produced the report.
The council’s recommendation was that babies born before 22 weeks, such as Amillia, should only be given intensive care as part of a research study. For those born between 25 and 23 weeks, it proposed a sliding scale with a diminishing expectation that intensive care should routinely be given as gestational age fell, unless the parents strongly objected.
The report was wrongly presented as proposing a blanket ban on saving extremely premature babies. Each case still had to be assessed on its merits, the authors said. One scenario presented was that of a 45-year-old woman who had no children, a last chance at pregnancy and who wanted to try to save her baby however slim the chance. One specialist, an author of the report, said that in that circumstance he would do whatever he could to help her.
Defending the need for guidelines, Professor Brazier said: “Natural instincts are to save all babies even if the baby’s chances of survival are low. However, we don’t think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable.”
Amillia is one of the lucky ones. Yet even for her, the future remains uncertain. She will continue receiving oxygen at home and her breathing will be monitored. Her parents perhaps more anxiously than most, will watch to see whether she passes her developmental milestones of walking and learning to communicate. But at four months, and doing well, she is already a beacon of hope to parents of premature babies across the globe.
The Stanley family: ‘They were tiny, and very ill’
Expecting twins, Victoria Stanley was in just the 23rd week of her pregnancy when she went into labour. “There was no warning, it had been a normal pregnancy. We had had IVF but no one drummed it into us that there was a higher risk of prematurity with twins.”
It was 15 August 2005, and her husband, Martin, rushed her to Ashford Hospital, the closest maternity unit to their home in Canterbury where the babies were born in four hours.
Daisy weighed 1lb 7ozs and Archie 1lb 12ozs when they were born at 23 weeks 6 days gestation. “They were absolutely tiny. I wasn’t allowed to hold them because they were very ill. They were whisked away and put on ventilators,” she said.
Both needed intensive care but there were no intensive care cots at Ashford so Daisy was transferred to London and Archie to Cambridge, their mother and father commuting between them.
“I was in complete shock. I was warned while I was in labour that their chances of surviving were slim and the chances of their doing so without disabilities were incredibly slim. In the first hours and days all you think about is: will they survive? You keep your fingers crossed and hope somehow things will work themselves out.”
After two days the call they had been dreading came. They were in London with Daisy when the medical team in Cambridge rang to say Archie was dying.
“He had a massive bleed in his lungs and in his brain. There was no chance at all. At least we had a day with him before he died which was a blessing.”
Daisy was still severely ill. After blood transfusions and a heart operation her parents were told she had a two to five per cent chance of survival. She finally went home in January 2006.
“I think every single day how unlucky we were – and how incredibly lucky we are.”