In Psychology Today, Frederic Neuman wrote two painful blog posts about his experiences as a young doctor with a child born with a terrible deformity. His eyes were fused. Part of his brain was missing. His esophagus went straight into his lungs making feeding impossible. Usually children with this condition only live for an hour after birth, although there was one case of a child lasting a year.
Neuman describes the pain of the staff that cared for the baby who lived for a week. The mother was told that her baby was dead. Neuman wonders if the baby's life should have been terminated immediately.
This is just a horrible story. As a parent of a child with a disability, I am extremely, extremely worried about doctors who make life and death decisions like this, especially without any consultation with the parents. However, it sounds like this child had a painful and unnecessarily cruel death. Why didn't they just sedate the poor kid?
What do you think?
Apt. 11d 
As a mother who has taken her 4 day old off life support and held her for 14 hours while she slowly died (attached to a morphine drip) I am just incredibly shocked at this physician’s continued defense of those decisions. I have compassion for the culture and time that he was in but it was absolutely cruel not to offer pain relief &/or sedation, even if they worried about dosing the baby to death. (?!) When we were discussing my daughter’s case, the next step after removal from the ventilator was to withhold feeding…I don’t think my husband and I could have done that, but the NICU team did talk to us about it and it is a painful process if you do not medicate.
And it was absolutely not, in my view, ethically acceptable to lie to the parents and hide the baby, at all. The only exception I can think of is if the mother was an unmarried minor, and even then I am not sure. I think there were many options…explain it to the parents, decide how to introduce the baby with a support team in place and so on. Maybe at that time and place those options were unthinkable, but they are certainly thinkable now.
No matter what disability a child has, a child is his or her parents’ CHILD. You just don’t DO that. Doctors do not have that right.
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I’m not going to read these blogs, but I agree that a doctor doesn’t have the right to withhold the information.
I do know, however, that withholding information is practically standard practice in some cultures. Japan comes to mind, as a high SES example, and, I suspect, that there are many low SES examples. In countries where much of the care being offered for some diseases (cancer, for example) is weakly palliative and nothing more, doctors frequently decide that there’s no point in telling the patient precisely what the situation is. The patient is going to die, and nothing is going to change that, so there’s no reason to tell them, so the logic goes. In those countries, I might have the same objection to lying, but the lie has to be considered within the framework of the generally limited care that’s being offered. If a patient isn’t being offered chemotherapy (or even surgery) because the 10-20-30-40-50% odds of survival don’t make the cost worthwhile, is it all that worse to also lie?
In America, though, doctors shouldn’t be allowed to lie to their patients.
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I didn’t read the whole thing, but I got this far:
“Therefore, he told the parents that it was born dead; and that the body had been disposed of.”
Wait–the parents didn’t want to bury their baby? Really? What a huge lapse in medical sensitivity to leave the parents believing that their baby had died and disappeared, God knows where.
http://www.asklubo.com/en/parenting/how-to-cope-with-the-death-of-a-newborn-during-or-after-birth
I understand that the protocols for dealing with loss of a newborn are a work in progress and that conventional wisdom has changed a lot since that time, but these parents were quite likely scarred for life just by the thought that their baby died and they were unable to see or touch the baby, provide a decent burial, or know where the body went.
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I read both awful posts and before I go hug my children, I just want to say I think there is something Very Seriously Wrong with Dr. Neuman, who wrote:
“A number of readers suggested the baby was treated badly. What exactly did we do wrong? There was no way of feeding it, so it had to starve to death. Besides avoiding the stupid and cruel business of treating the child’s extra fingers, I don’t know what else could have been done for this child. I would be interested in any thoughts anyone has about this. In particular, what should I have done?”
He should have sedated the poor baby (Amen, Laura!)! Provided pain relief! Obviously! A statement like that – as if he’s trying to convince himself there was no such thing as anesthesia <50 years ago – just completely boggles my mind.
I think he's being totally disingenuous about not wanting to hurt anyone. Lies of omission can be some of the most hurtful – how is that not completely obvious? I have no idea what year all of this went down, but clearly he failed to consider the feelings of people out there today who have lost a child in the hospital, who never got to hold their babies, who might be reading this and wondering if this was actually their child and their story.
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I did find it pretty shocking he’s a psychiatrist Hush.
Laura thanks for posting these – they have stayed with me.
And further to AmyP’s point…one of the very kindest and best things the NICU team did for us was treat us even more like Emily’s parents than I think your run of the mill hospital experience would. We were reinforced at every turn as being competent and caring. Our nurse hugged me and said she hoped we would have more kids because she could see we were (she emphasized the ‘are’) good parents. That single statement got me through my next pregnancy.
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hush said:
“I have no idea what year all of this went down, but clearly he failed to consider the feelings of people out there today who have lost a child in the hospital, who never got to hold their babies, who might be reading this and wondering if this was actually their child and their story.”
I didn’t think of that. That’s terrible.
JennG said:
“We were reinforced at every turn as being competent and caring. Our nurse hugged me and said she hoped we would have more kids because she could see we were (she emphasized the ‘are’) good parents. That single statement got me through my next pregnancy.”
That’s so sweet. I wonder if that good treatment was the product of training, or just good instincts on the part of staff?
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Knowing the hospital (Toronto Sick Kids) it was probably a combination of top-notch staff and really good training & team culture.
I have been fortunate not to be in too many hospitals in my life but Sick Kids is awesome. When my son had appendicitis (and a seizure) they had a child-life specialist to help him with his resulting needle phobia and to get him playing/drawing about his fears…we’re not talking cancer or anything, just a 4-day stay, and yet, they wanted him to come out emotionally sound as well as infection-free. Can’t say enough good about them really.
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