While medical advances go to the limits of survival with extreme premature births, a new study shows few of these miracle babies develop normally. In Germany doctors face a tough decision: when to save life at all costs.
Has the limit of medical possibilities been reached?
Rumaisa weighed just 244 grams when she was born last year in the US, and yet her birth had a heavy impact on the medical community: a new record for premature births was broken. Doctors had again proven that the boundary of life could be pushed back just a little further.
Every year, health professionals report an improved survival rate for extreme premature babies. In Germany, where advances in prenatal medicine keep apace with those in the US and the rest of the EU, there are some 70,000 premature births (approximately 10 percent of all births), and of those one percent are classified as extreme.
Advances in modern medicine are keeping apace with the statistics. Just 20 years ago, babies born prior to the 28th week of pregnancy and under 1,000 grams (normal is 40 weeks and 3,500 grams) had little chance of surviving. Today the threshold is much earlier.
Babies on the edge of life
In Germany, the boundary is drawn at 24 weeks, said Dr. Heinz-Peter Groneck, deputy chairman of the Association for Neonatology and Pediatric Intensive Medicine (GNPI). A child born after this point is entitled to the full spectrum of life-saving measures – even if that means going against the parents wishes – says the GNPI, which issues guidelines for obstetricians and pediatricians.
The Görsch quintets Elias, Kilian, Finja, Joshua und Tabea spent 71 days in intensive care before going home.
But what kind of life can these babies expect after they’ve been rescued from the threshold of survival?
A recent long-term study published by researchers in the United Kingdom and Switzerland shows that only a handful of the extreme premies have a good chance of developing normally. Four out of five children born prior to the 26th week with 700 grams or less had developed physical or mental handicaps by their sixth year, some of them extreme and requiring life-long assistance.
The study, conducted on some 4,000 premature births in Britain and Ireland in 1995, is one of the first to highlight the long-term consequences of extreme prematurity, and some experts say given the statistics, the medical profession needs to reconsider its guidelines and its practice of saving lives at all costs.
Redrawing the boundaries
Dr. Dieter Wolke, development psychologist and one of the researchers involved in the study, said in a recent interview with the Süddeutsche Zeitung, doctors need to re-evaluate their criteria for saving extreme premature lives. “Which quality of life these children can expect has not been examined enough,” he said. “Neonatology has pushed the limits of what is possible.”
Intensive care is sometimes needed for months after an extreme premature birth
In other countries the medical community is more restrictive on applying intensive life-saving measures. Given the high rate of severe handicaps, Switzerland has moved up the threshold by two weeks compared to Germany, the Netherlands by one.
Groeneck, who helps advise colleagues in such life or death matters, said a similar rule is not being considered in Germany, nor is it something in his opinion the parents would want. The discussion on when to do everything possible to save a baby must always take place on a case-by-case basis.
That means the decision-making process is an extremely difficult one, said Dr. Anke Rohde, director of the clinic for gynecological psychology in Bonn, one of Germany’s premier centers for extreme premature births. Moreover, the message the medical community is sending is a mixed one, she said.
“It is a schizophrenic situation,” the psychologist said. “On the one side everything is being done to save children with just a slight chance of survival, and on the other, late term abortions are being conducted until the 24th week, because a child has a birth defect and is deemed to have little chance of leading a normal life.”
The 24th week of pregnancy marks the threshold to survivability
The 24th week is indeed the “meeting point between life and death,” Groneck acknowledged, and it’s still a grey zone in which doctors are operating. There are no hard and fast rules to apply to all babies in all circumstances, the doctor conceded.
Saving lives – not at all costs
“This is medicine on the edge. We are working on the boundaries, but we know where we are headed,” Groneck said. The ideal is of course to save as many lives as possible with as few complications as possible, and not to continue pushing the boundary at all costs, he added.
Barbara Grieb, who runs the information center at the German network for premature births, agreed. “Doctors are not so unrealistic that they want to save children at all costs and under all circumstances. They look at the individual child and the life signs and then decide.”
The recommendation of 24 weeks reflects what is possible, said Grieb, herself the mother of a premature child. But she also said the limit has been reached: “There comes a point when medicine cannot replace what the child would have gained in the uterus.”