Bioethical Questions Raised by 'Cyclops Baby'

Thursday, July 19, 2012

(Alex E. Proimos/flickr)

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."

Guests:

Dr. Arthur Caplan

Produced by:

Robert Balint and Joe Hernandez

Comments [6]

Henry from Brooklyn

I'm glad I caught this discussion if only on the rebound. It could have been about my mother, except that she was told her fifth child was terribly deformed in a pregnancy that took place a few years before. She had had German measles around conception. After telling my parents what had happened, with their agreement, the doctor removed the baby from the oxygen tent "to see if it could live on its own" and it did not. I remember my mother and father still weeping and exhausted as they came out to the car where four of us under the age of 8 were waiting for them. Years later, my mother described what was wrong with the baby. She didn't mourn for that child for very long, if at all. She had plenty to do raising the rest of us. I can only imagine that the idea of a cyclops baby would have been deeply disturbing to a mother. Maybe I missed some of this story by only listening to the followup, but after all the intervening years in which we have been whipsawed by public debate, including the spectacle of a Downs baby being waved triumphantly at a political convention, I marvel at the privacy of the era in which this event took place and the trust the mother had in the doctor to take his word for it without a platoon of lawyers getting involved.

Jul. 19 2012 03:51 PM
Ross from New York

To answer your question, no, it is not ok to lie to patients. However the need for 'no' as an answer is due to the slippery slope at the other side of answering yes. There is however something to be said for exceptions. As a geek I think of the prime directive which is unequivocal and violations are met with the most severe consequences except under the rare circumstance where the rule is unable to apply to the situation. As described in this spot, there was nothing to be done.

Jul. 19 2012 03:47 PM
peggy from Queens, NY

This is an important discussion and a difficult one to have. Health care delivery today is complicated by many factors including but not limited to: Insurance coverage, availability of procedures, equipment, medicines, the expectations of patients/families and the ethnic culture of the patient/family, as well as the western culture(constantly dictating more more more and if you do not give me more I will sue you!). There are these discussions regarding end of life care and the use of resources. It is a constant discussion for those of us who work with people who are managing chronic illnesses in terms of refusing treatment and whether or not a health care provider can tolerate continuing to bear witness to someone who wants nature to take it's course. The 1960s may as well have been a billion years ago as far as medicine and truth telling in medicine goes. People are now given many options and can access a great amount of information to use for decision making with their health care team. All of that being said, it is very sad to think about those parents who were told that their child had died, when in fact the child was dying in the hospital. They were denied the right to get to attach to their baby and to send her off if you will. The baby was denied their love. Thankfully, today, there are a number of people available to help the parents process and grieve. Thank you for radio piece and for the interview with Dr. Caplan.

Jul. 19 2012 12:18 PM
Teresa from New York

Physicians need to remember that the letters following their names are M D and not G O D

Jul. 19 2012 09:37 AM
Daphne from Westchester

"In 2006, a baby was born with Cyclopia to a mother in India. While most of the infants born with this condition die within moments of birth, this baby lived beyond the 11th day. Some believed the infant was the physical manifestation of a God and worshipped both the infant and the parents"
Is this a case of cutural relativism? Was the doctors view of humanity so challenged that this baby viewed as subhuman?
At least in nazi Germany the baby would have been murdered immediately. Instead the babies cries tormented the staff as she belied the beliefs of the doctors that she was a living breathing human being.
The fact that Dr Neuman maintains that he refers to the baby as it because he did not know the gender. Did he never consult the chart? No doubt this was a mechanism to help distance him from the humanity of the child.
Ed hit the nail on the head. This was infanticide.

Jul. 19 2012 08:30 AM
Ed from Larchmont

Again, the ethical idea is to provide care - food, hydration, warmth, love - until the baby dies naturally. One can't directly kill the child, that is murder. I've listened to many stories of women who held such women in their arms until the child passed away, and they still treated the child as a member of their family. That's the human approach. The other route is infanticide by definition.

Jul. 19 2012 06:02 AM

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