Re: ethical dilemma
When I worked in the NICU, it seemed like there were constant ethical dilemmas. The worst one I ever participated in was with a 32 week preemie born to a 21 year old mom and 55 year old dad, both of whom were crack addicts. Baby was not born addicted to crack, but something was very off about her, in addition to the normal preemie stuff.
Numerous scans of her body and an exploratory lap showed that that baby had no intestines at all. No one could tell if the intestines never formed or if the tissue some how died off during development. But the fact remained that she had nothing below the stomach.
The doctors called in consults from surgery and GI and everyone concurred - this was a fatal defect. Several doctors presented this information to the parents, who refused to accept this. The insisted on a second opinion, which they got, but when the 2nd opinion agreed with the first, the parents went ballistic.
They insisted that SOMETHING be done; they were not up for allowing the child to die peacefully and with dignity. So someone had the brilliant idea to contact the nearest teaching hospital and ask them about it. The teaching hospital said that they just happened to be doing experimental intestinal gut transplants. Of course, the parents jumped on this bandwagon and ran with it.
In order to qualify for this surgery, the child would either have to be 9 months old or 12 pounds. She had a birth weight of 3 pounds. Since she couldn't eat or digest anything enterally, she would have to exist on TPN/lipids for 9 months or 12 pounds. By that time, she probably would have needed a new liver as well.
Our ethics committee got involved at this point, since the case was hopeless, would cause lots of pain and suffering, and a great deal of medical resources. Their first idea was to attempt to remove the child from the parents' custody. Since she tested positive for illegal drugs at birth, this probably could have been accomplished without too much difficulty. Some how, though, her parents got wind of this, and started threatening to go to all the newspapers, telling them that hospitals and CPS were stealing babies and killing them.
No one wanted that kind of publicity. So she stayed in her parents' custody and remained in the NICU for 2 months, trying to gain weight on TPN/lipids. Then, her parents finally slipped up, and came to the NICU high on crack, picked a fight with the staff and attacked an RT. The child was then removed for her parents' custody, and allowed to die a peaceful, comfortable death.
It was a horrible case all around.