A recent blog post by Dr. Fredric Neuman has stirred up questions about the ethics surrounding babies born with fatal deformities. When he was an intern in 1960, Neuman recalls a baby born with holoprosencephaly, a disorder where the brain has failed to fully develop. The child had only one eye fused into the middle of its forehead, and could not be fed.
In an attempt to spare her the trauma of seeing her child, the doctor told the baby's mother that it had died at birth. Then, the hospital staff stood by for 13 days as the disabled and disfigured child, unable to eat due to a birth defect, starved to death. Neuman remains torn on what should or even could have been done for the infant who was doomed from birth, saying that "there are experiences that are so peculiar in their character, so distinctive, so unexpected, that the usual rules break down. And that people are finally left with the idea: 'What is the right thing to do in this situation?'"
Art Caplan, head of the Division of Medical Ethics at NYU's Langone Medical Center, says that Neuman's story is typical for the times. "A lot of babies were allowed to die at that time, even ones with conditions like Down syndrome or spina bifida," he says. "It led to quite a controversy in the 1980s with people legislating and passing laws called the Baby Doe laws, saying you had to treat infants." These laws direct doctors to treat babies even if their parents do not approve, unless the defect that they face is definitely terminal.
"We have much more aggressive policies and much more aggressive treatment given to kids with mild but also severe congenital or born-with defects," Caplan says.
The discussion of whether parents should be told about birth defects has shifted considerably since the obstetrician withheld the knowledge of the baby in Neuman's case more than 50 years ago. "Today, you're going to get, I would say 99.9 percent of the time, an honest discussion with the parents that this child has been born with a fatal birth defect." Caplan says. Several choices are available, such as pain control or palliative care, or attempts to stave off the infant's death for as long as possible.
Another considerable shift in the discussion has been caused by the advances in prenatal testing, which can identify birth defects before the baby is born. "The future debate is not going to be about whether the baby should die, but whether the baby should be born," Caplan says.
"Parents have the discretion to do what they want, but we all need to be thinking hard about disability — not the disability incompatible with life, but what we really think of as constituting a disability, because that's where the testing is taking us," Caplan says. "We're not done with this issue yet; it's just shifting earlier and earlier."