For dear life

Where should doctors draw the line between supporting life and letting go?

BORN at just 23 weeks, Annie McFadden survived - partially blind, after months of traumatic surgery. But where should doctors draw the line between supporting life and letting go?

Cherie McFadden was just under six months pregnant and sitting at her desk in a high-rise offi ce above Perth when she felt her body lurch suddenly into the early stages of labour.

It was January 2007, and within an hour the 33-year-old was sitting on a bus heading to King Edward Memorial Hospital for Women, crying and fearful, as her husband Paul drove madly down from RAAF Base Pearce on the city’s northern outskirts, where he worked as a pilot.

The couple can still recall every detail of that grim afternoon in the hospital’s maternity ward, in particular the grave face of the obstetrician who advised them that a 22-week-old foetus was almost certain to die outside the womb.

Its skin was so fragile that it could tear like wet paper; its lungs would struggle to process oxygen; its brain and other organs were still not fully formed. In theory, such a baby could be artificially resuscitated, the doctor said, but death or severe disability was almost inevitable.

The McFaddens knew their baby was a girl, and they had already decided to name her Annie.

Now they listened as the doctor explained how their first child would be delivered, would be laid on Cherie’s chest, would make several gasping attempts at breathing, and would die.

But that seeming inevitability never happened, because for the next week Cherie McFadden lay in a hospital bed fighting her body’s urge to give birth while her husband spent hours at home, hunched over his computer as he downloaded hundreds of pages of medical literature on premature birth.

In the course of that research Paul McFadden made a crucial discovery: in a few days’ time his wife’s pregnancy would enteran uncertain area of medical controversy known among neonatologists as the "Grey Zone".

The Grey Zone is a term coined to describe the three-week span in an unborn baby’s life, between 23 and 25 weeks’ gestation, when survival outside the womb is possible but outcomes are terribly uncertain.

Fifty per cent of the babies born at this gestation will die, and those who live can often be afflicted cerebral palsy, intellectual disability or blindness. Some doctors refuse to resuscitate such fragile infants. But the McFaddens happened to be in the Australian hospital which had the most aggressive policy of supporting "23-weekers" if their parents requested it.

At 3am on January 23, only a few hours after Cherie’s pregnancy officially entered its 23rd week, the McFaddens made that request.

Annie McFadden was about the size of her father’s hand when she was delivered, weighing only 570 grams. "She looked like a baby bird that wouldn’t live," remembers Paul. "Completely purple, almost black. Totally limp, way beyond anything you think could survive."

The pediatrician pressed a stethoscope to this tiny creature’s chest and announced, "She’s got a heartbeat", then inserted a plastic breathing tube down her throat.

Within minutes the McFaddens’ daughter was laid on a steel intensive care warmer and connected by a tangle of tubes and wires to banks of computerised life-support systems. A ventilator delivered oxygen in carefully calibrated doses through her mouth; a catheter was inserted into the umbilical vein in her abdomen, and another pushed through to an artery near
her heart to measure blood pressure; a tube was inserted in her stomach to drain off air pushed in by the ventilator, and a sensor attached to her foot measured oxygen saturation in her blood.

Rushed to the Neonatal Intensive Care Unit, she was hooked up to a drip which fed glucose, amino acids and nutrients through a third catheter in her arm. It would be a month before Cherie McFadden was allowed to touch her.

With machines regulating her breathing, temperature, body fluids and nutrition levels, Annie spent the first two weeks hovering near death as she nearly succumbed to the shock of life outside the womb and a septic blood infection that required multiple transfusions.

Three weeks after delivery her bowel ruptured from a necrotising infection and she was transferred to Princess Margaret Hospital for Children, where surgeons cut open her abdomen from hip to hip and spent five hours mending and removing sections of her lower intestines which were barely wider than spaghetti. A faulty valve near her lungs caused wild gyrations in her bloodoxygen levels, and at 30 weeks she developed a lung infection so dire it required the administration of four antibiotics.

In the second month following her birth she nearly died twice – first when a ventilation tube shifted in her airway, and shortly afterwards from severe pneumonia. Antibiotics kept her alive, and steroids were given to promote her lung development.

At 38 weeks severe gastroenteritis nearly killed her, and a week later the retina in her right eye began detaching. For four weeks she underwent a series of operations in which eye surgeons attempted to reattach the retina by burning blood vessels around it with a laser, injecting a gas bubble into the centre of the eyeball, applying microdroplets of dry-ice and finally wrapping the entire eyeball with an elasticised "scleral buckle".

The surgery saved 20 per cent of her vision in the eye, but two weeks later the entire retina in the other eye detached.

It wasn’t until June 27, five months after her birth, that the McFaddens were finally allowed to bring their baby home.

Since then the couple have had a son, Michael, whose birth last November was perfectly normal.

On a recent winter evening the family’s home in Perth’s southern suburbs is a hive of post-dinner activity as baby Michael is put to bed and Annie runs energetically around the lounge room in her pyjamas. Only at a second glance do you notice that Annie still does not speak, and that the story books littering the floor are written in Braille.

The McFaddens have thus become one of hundreds of families whose premature baby has miraculously survived, only to be significantly disabled. It’s an outcome that has led them to contemplate some big questions about the nature of life and the limits of medical intervention.

"The bad news doesn’t stop when you come home," admits Paul. "One of the doctors we consulted compared it to the waves hitting the coast – it just keeps on coming. It might be five years before you discover whether your child is developmentally delayed."

But as he looks at his daughter, his voice softens. "Whatever outcome Annie has, for her it will be normal. None of us are judged by what we don’t have. I don’t have Einstein’s intellect or Carl Lewis’s speed. Who makes the decision about what quality of life is acceptable?"

Read the full story in The Weekend Australian Magazine