Term Bub with extensive cerebral bleed

Tweety, BSN, RN · Jan 13, 2003

I'm sorry you have to watch this.

I would be as supportive as I can to the family. It's so brave to withdraw in cases like this. And in my opinion very kind to the child. They could be heroic, put a trach and a peg and have a little child live in a permanent vegetative state, a life of misery for who knows how long.

But it must be just horrible to be a part of and watch.

Take care.

NurseDennie, BSN, RN · Jan 14, 2003

It is a terrible tragedy. This happened to the son of someone who begame a friend of mine not long after his birth. He survived the original bleed and they fed him, and he carried on.

Poor kid, he had beautiful features that were just so deformed by the bleed and then by the surgeries to try to "help." The poor mum was just frazzled. The baby was difficult to hold, difficult to feed, difficult to comfort... He was just difficult, and she was just worn to a thread. I'd offer to babysit him, and she'd be worried about HIM of course, but then she'd feel so guilty because she worried about lending me this "difficult" baby to babysit. But I watched her with him and I was convinced that I wouldn't harm the child, and he cried a lot when he was with his mum, too. I didn't see a problem watching him. The marriage couldn't stand the strain, and they broke up before the baby was 2.

She moved away when he was about six, and I haven't seen them since and we've lost touch. Up to the point that we lost touch, he didn't really have much in the way of quality of life, I'm afraid. He grew, but pretty much was at the same level he was almost from day 1. I'm afraid she she probably stayed worn out and frazzled, too. She never did get over feeling guilty about letting anybody take care of him for her, even for a few minutes.

Love

Dennie

RN2B2005 · Jan 14, 2003

I can't imagine the grief the parents must feel...somehow I think it would be easier, as a mum, if the baby was preterm or otherwise compromised. To have a beautiful fullterm baby born and then have his brain bleed out must be the most awful thing in the world.

It sounds like the parents have made the right decision, with aggressive pain control but no invasive measures. I don't know if I could be that strong, if it were my bub. :sniff:

AlaskaKat · Jan 14, 2003

Originally posted by ktwlpn
"in the states you have to provide nutrition one way or another" ....Is that the law? Do you mean that if this were my child I would not have the option of taking her home and holding and rocking her in her nursery until she died? I would have to allow artificial feeding of some type causing her to go through 6 to 12 months of existence?

Everyone always has to option to refuse medical treatment, even for their child. It may not always be explained to them in this way, but it is their right.

This child sounds like the perfect candidate for organ donation, probably has a beautifully undamaged heart, kidneys, pancreas, etc. If it were my child I think the only way I could survive this type of ordeal would be if I felt like his birth had some purpose and that he had helped another child.

What a tragedy, my heart goes out to the family and nurses.

Little One2 · Jan 14, 2003

That is a terrible tragedy. I would think it would be hard for the parents to take the baby home to die. I would think it would be better for the family to take care of the baby in the hospital where there is support more readily available.

Sally_ICURN · Jan 14, 2003

Originally posted by ktwlpn
"in the states you have to provide nutrition one way or another" ....Is that the law?

No it's not a law. As a matter of fact, just today I was reading through my old AJN's that I have been meaning to read since August! In the October, 2002 issue, Vol 102, No. 10, page 24CC there is an article titled "Letting Nature Takes It's Course." The article is about "One family's choice of hospice home care for their terminally ill infant."

This has nothing to do with the article, but I beleive it was 1998 when the federal government tried to prosecute the greiving mother and father of "Baby Doe," a child born severely mentally retarded, problems with her esophagus, and something else I can't remember right now. The parents decided under the guidance of physicians and other support systems not to treat their daughter. They withheld all treatments including nutrition and provided only comfort care. The feds and a certain outraged segment of society believed this child should have been treated. To make a long story short, the government dropped the case and ended up paying thousands in attorney fees for this poor family.

It's never easy to make the decision to withdraw support/treatment for an adult or a child. But withdrawing support or deciding not to treat, when it is known that there is "no likelihood of benefit" or that the treatment would not be "effective in ameliorating or correcting the infant's life-threatening conditions," is just like you or me stating in an advance directive that we want no heroic measures taken should our life be dependent on that type of treament. Does that make sense? The parents act on the behalf of the child. And they can decide not to provide nutrition.

The infant in the article had no bowel and his liver was shot. "However, the feedings were continued because the parents saw it as a comfort measure." It was their choice to eventually stop the nutrition.

It's never easy.

~Sally

MomNRN, BSN, RN · Jan 14, 2003

What a horrible tragedy. Similar to one I lived through myself. We were blessed with fabulous nurses and social workers who led us through the maze of medical options. I was not a nurse at the time and not familiar with all of this information.

The social worker was the one who said we were the ones to make the final choices about what would be and could be done for our child. Once we signed the DNR, he died the next day. Although he was not on any type of respiratory assistance, he needed to be continually suctioned since he could not swallow. After spending several hours with his grandfather holding him, my FIL persuaded the nurses to discontinue the suctioning and to just let him go.

It was peaceful at the end. What a horrible choice to make. I'm sorry anyone else has to live through it.

NicuGal, MSN, RN · Jan 14, 2003

NICU is such a different world. Sure, as nurses we would take our kids home, but the public in general see this baby, who keep on going and especially if it isn't on the vent, and think...there is a chance. We have prepared families for the worst and then we take off the vent and unfortunately the baby ticks on. I have never, in 16 years, seen a baby be allowed to be starved or dehydrated, especially in brain traumas. Also, someone else stated that this baby would be a good organ donation candidiate...no, not unless that baby is declared brain dead. They don't do "living" donors. We have given children an GT and sent them home with hospice or up to comp care if the parents couldn't take care of him or her. These kids are heartbreaking, but if these parents take it home and then didn't feed it , that is child neglect and endangering. At least that is how it was explained to us at an ethics meeting. Most of the kids that we withdraw treatment on are completed devastated, on vents with no resp drive, no chance of every recovering. We have kids that are terminal that have a DNR, they have terrrible heads and terrible chronic conditions, but they are all fed or hydrated.

The ethical side to NICU is still being mapped out. Believe me, we go around and around about this everyday, as many NICU and I am sure PICU nurses can tell you. There are days that we all wonder what the heck we are doing!