Curious to hear NICU nurses perspective--23-wkr, NEC m - page 3

Parents fighting hospital to continue aggresive measures.... Read More

  1. by   dawngloves
    I am so glad that child isn't suffereing anymore. I hope the parents find peace.
  2. by   BabyRN2Be
    Quote from dawngloves
    I am so glad that child isn't suffereing anymore. I hope the parents find peace.
    :yeahthat:

    Yes, I'm so glad that she's at peace now. And I hope that the parents receive some sort of grief counseling. They are very angry now, and have been for a while. If they don't resolve that anger, it's going to affect their lives for years down the road.

    And I agree that the blog was one-sided. I was reading while tempering my thoughts with, "this is coming from someone who has no medical education, who probably saw a miracle 22 weeker on Oprah and assumes they can save all babies born too young."

    Very sad.
  3. by   BabyRN2Be
    I also thought of something else. I know that this man (who wrote most of it) and his wife are trying desperately to save their dying child. As I said, it doesn't sound like either of them have any medical education (unless it benefits them: the Hippocratic Oath) and are unable to face some very important facts regarding the treatment of their daughter. This is all part of the bereavement process - anger.

    However, I was a little offended at the way he referred to the hospital personnel all the way from the clerks to the neonatal fellow.
    1. He was upset that the clerks were not there right away to meet his demands. Hmmm... I'm so sorry sir that we weren't there to let you in the nanosecond you approached the window. Oh, we were such bad clerks not to let you in despite that we had six individual codes going on simultaneously at the moment that you needed to be let in, brought juice, etc.

    2. As I read it, it implied that there was only one nurse who took the time to care for his child as she should be.

    3. Referring to the neonatal fellow as a "pretend doctor." Umm.. a postdoctoral fellow has an MD, and is a full doctor, and calling him a "pretend doctor" is a little insulting.

    I tell ya, I wouldn't want to be working on this unit when this guy was there. Despite the fact that his daughter was in a terminal condition, he didn't follow the chain of command for grievances and instead took matters into his own hands and went to the news media.

    I also think he didn't take the time to sit down and study up on what he dx really meant, that there was nothing to do if her bowel and liver were gone. Maybe he would have been more understanding, taken the time to rigorously read up on his baby's condition, but he sounds to me like a "shoot first, ask questions later" type of person, and probably was a total PIA for all the staff to deal with while they were there.

    That being said, I'm truly sorry that his daughter did pass away and as I mentioned earlier, I hope that they have some provision for counseling.
  4. by   dawngloves
    I've dealt with similar parents before. Some are very angry and project onto the staff their feelings of guilt and fear. We are blamed for not doing enough or not knowing what we're doing. If I had a dime for everytime I've heard, "I want my baby transferred!" I could pay for the transfer myself, which I would love to do, believe me!
    Others are in complete denial and when approached with the severity of their child's illness We are blown off as being idiots because their baby will be just fine.
    Everyone has different coping mechinisms. Some have better than others.
    And while it does make me angry to see parents like these spout off about the poor care their baby got/gets, I know better. I don't take it personal and when I care for parents like this, I don't get on the defensive. I will explain every little thing I am doing and why. I try and pull out of them their sadness and fear in a more constructive way. (Remember theraputic communication? "How does that make you feel?" LOL!) At the end of the day it is emotionally exhausting caring for the three of them. (Mom,Dad,Baby)
    A little empathy can go a long way and hopfully, in time, the parents will deal with their grief in a less destructive manner.
  5. by   t2000JC
    How do you guys deal with it? I can deal with nervous parents, upset parents, parents who ask a million questions...I just can't deal with ungrateful parents, especially when we work so hard. And, since the general public is uninformed, I get so annoyed at all of these sweeping statements that are being made in this situation.
    That being said, I don't recall a situation in our unit where parents refused to let a child go and and we went ahead anyway.
  6. by   Nyoro
    I`ve been away from this board for a while - actually doing some studying. Hard to manage with a demanding 2 year old around.

    That poor little baby... I really feel bad for her. And for the parents, in a different way. There is nothing that depresses or frustrates me more than parents who outright refuse to see reality. Sometimes there really only IS so much you can do. I may sound cold, but if those parents really understood what having their little girl hold on even longer REALLY meant for her, they would be happy she has the chance to pass on early in the game.

    Right now, I volunteer "support" in our NICU - trying to cheer mothers up, helping snuggle and feed, and then giving my "mother" advice. Parents tend to like to listen to someone who has been through a similar ride, but who isn`t a "real nurse".
    We only have one serious chronic in our unit right now. She has never been well enough to transfer out (We transfer out the chronics over 1 as soon as they can survive on lesser care.) She is 4 now, never been out of a hospital bed, never sat up on her own, on waiting lists for various transplants, etc. Even if she gets the transplants, she had a bilateral grade 4 IVH plus PVL, is blind, and seizes at least 20 times a day.
    Her mother fought and fought for her care... Until she DID get well enough to sort of survive. And THEN she thought about it. Now she regrets it, but it`s too late. She also volunteers to talk to mothers who are at the care crossroads... And most of them choose to let their baby go.

    I guess we`re lucky in that we never get the "God`s will" sort of talk in our unit, and I`ve only once seen a truly angry parent (36 week twins, bedded together, delayed their homecoming by one day because one of them had softer stool than usual. Better safe than sorry in my opinion, but not the dad`s!) We tend to get the weepy, must be the perfect mother! moms. The ones who sit 8 hours next to their baby`s isolette with teary eyes.

    By the way, our unit`s policy is 24 weeks or >500g. We get puffy 22 weekers sometimes, and bony 27 weekers too. The smallest we`ve had make it was 437g/25w. (My son, who I actually fought with the doctors to NOT give him care. I didn`t think anything so small could survive with any quality of life. Luckily, the didn`t listen to me, and now I have a virtually normal little boy.)
  7. by   ginger58
    Quote from Nyoro
    She is 4 now, never been out of a hospital bed, never sat up on her own, on waiting lists for various transplants, etc. Even if she gets the transplants, she had a bilateral grade 4 IVH plus PVL, is blind, and seizes at least 20 times a day.
    I'm just curious but why is she on any transplant list in this condition. Why can't she be placed on palliative care?
  8. by   Gompers
    Quote from Nyoro
    We only have one serious chronic in our unit right now. She has never been well enough to transfer out (We transfer out the chronics over 1 as soon as they can survive on lesser care.) She is 4 now, never been out of a hospital bed, never sat up on her own, on waiting lists for various transplants, etc. Even if she gets the transplants, she had a bilateral grade 4 IVH plus PVL, is blind, and seizes at least 20 times a day.
    Her mother fought and fought for her care... Until she DID get well enough to sort of survive. And THEN she thought about it. Now she regrets it, but it`s too late. She also volunteers to talk to mothers who are at the care crossroads... And most of them choose to let their baby go.
    Yikes. FOUR years old? We transfer them to PICU at one year, if they aren't stable to go to a pediatric rehab facility yet. We are just not trained to care for children that age. And I agree with Ginger - if the mom realizes she should have let go years ago, why is she wanting transplants now instead of pallative care? Can't she make the child a DNR and do hospice care at the hospital? So sad...
  9. by   Gompers
    Quote from Nyoro
    By the way, our unit`s policy is 24 weeks or >500g. We get puffy 22 weekers sometimes, and bony 27 weekers too. The smallest we`ve had make it was 437g/25w. (My son, who I actually fought with the doctors to NOT give him care. I didn`t think anything so small could survive with any quality of life. Luckily, the didn`t listen to me, and now I have a virtually normal little boy.)
    Eeeeek! I just had an ultrasound yesterday at 25 weeks and they estimated the fetal weight to be 880 grams! He or she is large for gestational age though (70th percentile) and I'm guessing your little guy was small for his age. Glad to hear he's doing well! Bless you for "giving back" to the NICU community. I'm sure they appreciate your time and wisdom.
  10. by   Nyoro
    Quote from ginger58
    I'm just curious but why is she on any transplant list in this condition. Why can't she be placed on palliative care?
    I really don`t know all that much detail about her case - I don`t have much to do with her other than disinfecting her plush toys and occasionally talking to her mother. But I do know that she DOES respond to attention, and turns her head and smiles in response to her name, and shows understanding in other situations - so she isn`t just a vegetable... But according to her mother, that makes it all the worse. I think that the opinion right now is that she *does* have the potential to improve, but that her physical condition is holding her back - hence the transplants.

    The thing is, in Japan, a child on a transplant list is just basically a formality. It is illegal here to remove organs from someone who isn`t old enough to give consent or put themselves on a list. The only thing it means is that she`ll get priority if she survives to the point where they can use an adult donor.
  11. by   Nyoro
    Quote from Gompers
    Eeeeek! I just had an ultrasound yesterday at 25 weeks and they estimated the fetal weight to be 880 grams! He or she is large for gestational age though (70th percentile) and I'm guessing your little guy was small for his age. Glad to hear he's doing well! Bless you for "giving back" to the NICU community. I'm sure they appreciate your time and wisdom.
    Thanks - but all I really do now is try to offer some support, and to show the more shocked and depressed mothers that there is hope... And that the little red wrinkled thing in the box does eventually turn into a baby. :wink2:

    In our case, the placenta didn`t properly form and there was only one umbilical artery. Around 23 weeks it seems that the placenta started deteriorating and leaking contamination into my bloodstream. I started going into shock (Apparently, I felt fine though.) and my body started cutting off everything to my son. His blood thickened and he suffered a stroke. At the 25 week point, he totally stopped moving. When I went to the hospital they couldn`t even *find* the umbilical cord on the ultrasound, and I ended up being sent pretty much straight to surgery. He was pretty severely IUGR and dehydrated at "birth".

    From the moment I knew he`d have to come out, I begged the doctors just to let him be and to let him die in peace. I assumed that care for any baby that small was just prolonging the inevitable, and causing unnecessary pain. They overrode me as the law here says that after 24 weeks, the child is a separate patient and must be given care. I did to put a DNR on him after a week, but he never dropped low enough for it to come into consideration.

    Other than a few hiccups (MRSA is the big one), the NICU stay was a smooth ride. No NEC, no IVH, every problem other than ROP resolved without surgery, etc.

    I`m one of those people who instead of getting upset about something, *research* it. By the time he was discharged at 5 months I had read an entire syllabus of medical books. The more I know, the less I have to fear from ignorance. I figured that since I had read that much ANYWAY, I`d might as well put forth a little more effort and actually work toward being licensed. That`s taking quite a bit of time though, as my son is a bit demanding of my attention. Plus, most of the medical texts I read were imported from the US. The ones they test you on here are (obviously) Japanese, and Japanese medical terminology is a pain to memorize.
  12. by   LilPeanut
    This child had nec totalis?

    I think the parents just were in denial. They were focusing on the fact that the staff had said to not expect more than a couple of days more because of sepsis, and never were able to get past that point. They got it set in their head that if she made it past those couple of days, she would be alright, which we know is not actually the case.

    I'll share again the story of a former 25w baby who was 9m old when her parents decided to turn off the vent. She could smile and interact with her parents and staff, but she had PVL and showing other atrophy in the brain. Her parents knew that she could never get a lung transplant with her brain like that and a transplant was her only hope for long term survival. Once it was clear that she wouldn't be able to get new lungs, they turned off support. It was incredibly brave and I am so impressed they were able ot do it.

    It's a sad situation all around

close