Quote from cardiacRN2006
Think about the parents. They can't see the proven stats or high morbitity and mortality. They just see their precious baby. I have been trying to have a baby for a long time now (too long), and I can see myself finally having a baby, and having it end up in NICU. I would want to spend every minute with my baby-I would want to be a mother for as long as I could. I would want my baby on this planet for as long as possible.
You remind me of a mom that had twins up in our NICU. They were born at 23 weeks, and the smaller twin (<500gms) died after 36 hours. The other twin had a very bad course and it was pretty obvious that he was terminal by the time he was 3 months old. But no matter how many docs, nurses, social workers, or chaplains talked to the mom - she refused to take the baby off the vent or make him a DNR. Ethics was called in, but since mom had a full understanding of what was going on with the baby and what the outcome might be, we were to keep aggressively treating the baby. He lived until he was about six months old.
I was the primary nurse, and for those last few months, every day another staff member came up to me and made it quite obvious that they disagreed with this treatment. I would tell them that mom was aware of everything and that we couldn't make her discontinue treatment. It really got to me - I mean EVERY DAY people bugged me. There wasn't much more I could do! They considered it abuse to keep him alive. Many thought that mom believed the baby would get better some day, like some kind of miracle would happen. But the thing is, she didn't think that. She figured he wasn't going to make it. She just wanted to hold on to him for as long as she could. Many called it selfish, but others could really see her point - if you know your child won't live a full life, wouldn't you want to keep them alive for as long as you could? Isn't it natural to feel that way?
My coworkers never really believed me that mom was realistic. They weren't at the bedside to hear her say things that told me she had agonized over this decision and that she knew people didn't agree...
"How can I make the decision to end someone's life, much less my own child's?"
"My mother-in-law wants me to get a job. How can I? He's in the hospital here, and if he ever gets home, he'll probably be confined to one room with all kinds of machines - what, is she going to babysit for me? She had one kid and was terrified. How is she going to handle something like a trach or central line?"
"I know that people don't agree with keeping him alive. I know that some of the nurses are really against it. All I ask is that they not be assigned to my baby, I think it's better for everyone that way."
"Do people honestly think I don't know that he's going to die? I already had one baby die up here, I know it happens. Why do you think I spend twelve hours a day at his bedside? I want to spend every minute I can with him, because I don't know how long he'll be in my life."
Maybe had our docs not given the choice to take him off support, but rather just told the parents they were stopping...it might have been different. But the team never did that, so we'll never know.
The day he died, it was obvious his body was shutting down. The attending called and told mom, and you know what? She was totally accepting of it. She didn't want us to code him, do any more labs, make any more changes. She just wanted him to get morphine, and wanted the whole family to get the chance to hold him before he died. He never was taken off the vent, he passed away still attached, in his mother's arms.
This was such an extreme case, but I wanted to post about it because I thought it was relevant.