As far as pain goes they really are not sure. There are definitely signs that the body registers pain from the brain stem, how much pain is perceived by the infant is still unclear. I can tell you that they show signs of pain, whenever doing a painful procedure you can see the heart rate and blood pressure increase, or do the opposite and the heart rate plummets into severe bradycardia. It sucks to be the one inserting IV's and blood draws knowing it's both pointless, and you sincerely hope that they don't process pain.
I read about Tinsley. I remember there being discussions as to parts of her body dying and decaying, many people day did not think it was possible. It absolutely is possible! When the body begins to shut down, blood circulation to the extremities slows and even stops. Reading that fingers, toes, nose are rotting was probably going on . I once took care of in infant in septic shock. He lost circulation to his legs, and the tip of his nose. After several doses of antibiotics, and vasopressors some circulation came back, but the tip of his nose was narcotic and had to be removed. Even worse his left leg from below mid thigh had died, and was mummified, until he was strong enough for it to be amputated, my fear was accidentally hitting it against the radiant warmer and it breaking off. It was horrific and he actually lived.
The sad thing about amniotic banding is they usually have a normal brain as long as the head and neck were not constricted.
So many crazy parents, I don't know where to begin. The worst are those that insist everything be done, but rarely bother to visit. When they do show up they demand food trays, hotel vouchers, and cab vouchers. They preach to you thier baby is going to be the miracle, and they totally ignore you when you tell them that. you just got their pain under control and they are resting. Instead of waiting awhile, they insist you wake the baby up and handle them because they want to hold them when convenient for them.
Many of those who let their baby suffer for months, when the time comes and the baby is actually dying, they can't bother to come and hold them. I spent many hours holding a dying infant because they are human beings and deserve to be held rather than die in a bed.
The drug babies are the hardest, not the most interesting as defects, but otherwise perfectly healthy babies n o much pain from withdrawal, in spite of regular doses of morphine. They cry for hours on end. After 12 hours I couldn't take it anymore. Yet those parents will visit so high on drugs and somehow despite losing any other children, they are still given a chance. It is shaken baby syndrome waiting to happen if they are not dumped off on relatives first