Can all parents really make good decisions - page 2

What help is there really available for a hoplessly ill infant with bilat grade 4 bleeds, deaf, blind on an oss vent with C02's in 100's,ph's 7.00-7.007 septic, hydroceph with shunt, on Vec gtt,... Read More

  1. by   mercyteapot
    There are also those ''miracle'' babies that have surprisingly few problems despite all the odds. Yes, they're less than 1% of all such births, but they do exist. It isn't for ''us'' (meaning health care workers collectively) to make these decisions. It would devastate me if I had to make such a decision for my own child, I am certainly not going to sit in judgement of those who hang on to the merest vestige of hope.
  2. by   Katnip
    Quote from MomNRN
    I
    We were intelligent parents who cared. We just needed someone to sit down with us and take the time to answer questions and not judge us. It is a VERY DIFFICULT choice to make.
    This is what an ethics committee can do. I've seen them sit with the doctor and the family to explain exactly what's at stake and what can be done. They do not tell the families what to do, but they can help enlighten the family and help guide them. Since there's almost always a member of the clergy on the committee that can also help with any guilt the family may be feeling.
  3. by   mauigal
    agree with you 100%
  4. by   KellieNurse06
    Quote from TheCommuter
    Some parents are too emotionally detached to make decisions that would be in the best interest of their child. Other parents lack the educational level and comprehension of the current situation facing their child and, therefore, aren't capable of making totally informed decisions.
    ...wait right there........this is offensive when comments like this are made out of context, especially to those who have been in that situation as a parent......
    I have a perfect example to give you....my daughter was very sick two years ago....one of many many times..and a nurse who was taking care of my daughter literally said behind my back in a whisper to one of our home nurses who came to visit her in the ICU.."mom's just in a little bit of denial" :angryfire . I have taken care of my child at home for 17 yrs.......so I hardly think denial even is an issue .........especially since this idiot knew me all of 4 days...............so do you see the picture here?
    I am not bashing you...I am not trying to.....and in some cases yes you have a valid point ...but these are peoples babies.......and your personal feelings should not even be brought into it. They are the ones who have to live with whatever desicion they make for that child regardless of the situation. Also does it really matter about the parents "lack of education" as you put it? How do you know what their education is??? Does it really matter? They are only thinking of their baby I can pretty much guess.....not thinking..gee...I guess I better get educated ...............geez! Parents will let go when they realize the right time has come and not a minute sooner......life isn't fair and no one said it was.........but it 's life like it or not........
    Last edit by KellieNurse06 on Sep 15, '06
  5. by   KellieNurse06
    Quote from mercyteapot
    There are also those ''miracle'' babies that have surprisingly few problems despite all the odds. Yes, they're less than 1% of all such births, but they do exist. It isn't for ''us'' (meaning health care workers collectively) to make these decisions. It would devastate me if I had to make such a decision for my own child, I am certainly not going to sit in judgement of those who hang on to the merest vestige of hope.
    absolutely agree 100% with you here :icon_hug:
  6. by   KellieNurse06
    :icon_hug:
    Quote from pleadingmom
    I have to jump in here, as a parent of 2 micro-preemies, I have to say that they are the light of our lives. YES it is very hard to raise a disbaled child and 1 with a severe learning disability, but I would not want it any other way.

    They called us in shortly after her PDA ligation and told us she was not going to make it through the night, she was extremely sick, there was no way that we were going to let her go that easy. we called in our priest, called my inlaws to bring us pillows and blankets and we spent the night at the hospital by her side praying and praying all night. In the morning a miracle happened, she slowly started to recover, and then it was uphill from there. See miracles do happen, and when you are emotionally attcahed you see that.

    I know clients who have had severly disabled children (not preemie) and were asked to let go, they never gave up, they were told they wwould never sit up or stand or walk, THEY PROVED THEM WRONG!!!!! Enough love and faith will get you through, no matter what the outcome, yes some people may not be able to handle that, but god works in mysterious ways, we are chosen for a reason.

    thanks for listening
    absolutely!!!! My daughter had sepsis a few years ago..and I was literally told it was only a matter of hours before the end......lactate acid levels were saying so, oscillating vent...dopamine drip...whole 9 yards................and was told no more could be done............well 2 years later she is still here.......and yes she's severly disabled ( has been since she was 3 wks old)..but you know even one of docs who cared for her at that time literally looked up at the ceiling and said "something is definetly watching over her because I have witnessed a miracle without a doubt"...........so yes I agree with you 100%!!! I actually do have my daughter as a DNR now......but she isn't ready to go yet so I will enjoy her until she decides her time has come...........she has taught me more in her life than I ever could learn in my entire lifetime......and I wouldn't have it any other way......and as sad as it is to see her overall health the way it is..that girl always is happy & smiling....and that's all that matters to me.......she will go when she is good & ready to...and I am accepting of that totally
    Last edit by KellieNurse06 on Sep 14, '06
  7. by   pleadingmom
    Quote from KellieNurse06
    :icon_hug:
    absolutely!!!! My daughter had sepsis a few years ago..and I was literally told it was only a matter of hours before the end......lactate acid levels were saying so, oscillating vent...dopamine drip...whole 9 yards................and was told no more could be done............well 2 years later she is still here.......and yes she's severly disabled ( has been since she was 3 wks old)..but you know even one of docs who cared for her at that time literally looked up at the ceiling and said "something is definetly watching over her because I have witnessed a miracle without a doubt"...........so yes I agree with you 100%!!! I actually do have my daughter as a DNR now......but she isn't ready to go yet so I will enjoy her until she decides her time has come...........she has taught me more in her life than I ever could learn in my entire lifetime......and I wouldn't have it any other way......and as sad as it is to see her overall health the way it is..that girl always is happy & smiling....and that's all that matters to me.......she will go when she is good & ready to...and I am accepting of that totally
    Here, here, it is no one's decission to make but first the lord above and second the parents, this is the parents choice. Alot of people had said to me, how do you do it, with the 3 kids all the appointments they have to go to, the business, your husband, I could never handle it, I would have gone insane by now. You just do it, you don't think about it, I couldn't imagine it any other way, I think I would be really board :wink2:

    And as far as them teaching us something, that is so true, my one daughter is blind, something that all of us take for granted, she will never see the beautiful christmas lights, nor the softly falling snow or a glitter is someone's eye, but she is the happiestkid out there, she does not care that she cannot see, she sees in her own way......so who's choice is it?
  8. by   dawngloves
    This is starting to get a little off topic. The OP is wondering who would be an advocate for that particular pt. The mother who pops in every now and again or the docs that don't want to touch that with a ten foot pole?
    While I am happy for the parents that find joy in their surviving micro preemies,we as nurses have to look at situations on an individual basis.
    Quality of life, ability for parents to care for child,pain and suffering beyond our control, ect. These are all the things considered when we care for extremely ill neonates.Please, don't take it personally.
    In this case of this OP,it sounds like social work needs to be more involved.
  9. by   Gompers
    Quote from dawngloves
    This is starting to get a little off topic. The OP is wondering who would be an advocate for that particular pt. The mother who pops in every now and again or the docs that don't want to touch that with a ten foot pole?
    While I am happy for the parents that find joy in their surviving micro preemies,we as nurses have to look at situations on an individual basis.
    Quality of life, ability for parents to care for child,pain and suffering beyond our control, ect. These are all the things considered when we care for extremely ill neonates.Please, don't take it personally.
    In this case of this OP,it sounds like social work needs to be more involved.
    I agree, Dawngloves. I also agree that there needs to be more social and ethical intervention in ALL cases, not just the one the original poster described.

    Also...just a note...

    We, as NICU nurses, do reserve the right to have feelings about what we do for these tiny patients. We are the ones caring for them every day. We cannot control how we feel. There is nothing wrong with NICU nurses coming to this message board to vent their feelings - that is part of what it's here for! Yes, it is a public forum and parents are welcome to visit and post along with us - but this is the proper place for us to take our frustrations, an anonymous safe place where we can vent our feelings and not be judged. It is emotionally exhausting to care for crically ill neonates. We are the ones that have to stick them for IVs and lab draws, place tubes and catheters, painfully turn them, tend to their wounds, suction their lungs, everything. When a baby is suffering and in pain, it kills us to have to do these things to them! The only way we can justify it sometimes is to look at all the babies that have survived and done well after being so very sick. But when we are caring for a baby where there really is no hope - and yes there are plenty of cases where even "miracles" will not cut it - it is very hard for us to do these things. We feel we are only adding to their suffering, and as nurses, we always strive to make our patients feel better, not worse. It is an emotionally exhausting job because we care for these babies so much.

    Just as parents of NICU babies haven't walked in our shoes, we have not walked in theirs. Let us please refrain from judging each other and stick to the original topic at hand, okay?
  10. by   Altra
    As an ER nurse I know how much it affects us staff on the relatively rare occasion that we have a really, really sick or badly injured little one. You NICU nurses (and parents who have been through that difficult road with your own children) have my utmost respect. I couldn't do it ... give me way too many patients, an ER waiting room that looks like a UN refugee camp, and a coked-up junkie trying to swing at me ... I'll get through it.

    But the thought of speding all day, every day with those precious little ones hovering between life & death and their familes ... I think I'd just dissolve into a pool of tears.

    Don't mean to hijack the thread - just wanted to take a minute to say thanks for all that you do.
  11. by   33-weeker
    then there's the pt. my friend told me about - teenage mom with a 20-something weeker with multiple, unrelated sydromes, blind, deaf, yada yada yada, with 15 different drips going (4 nurses x 1 hour to change each day - had to line up 4 bedside tables to lay it all out), one of which was pavulon (sp?) -- yes... a pav drip. trached, etc. no doubt, a hopeless case.

    the mom visited occasionally, mainly to ask when her baby would be able to go with her to wal-mart. she wouldn't give permission to dnr. kid lived almost a year. coded all the time. the nurses who told the truth about what the child was like in the ethics meetings (frequent) got put on mom's list of 'not to care for my baby'. nurses finally started adding themselves to mom's list.

    this was not about baby and right to live - it was about mom, her ignorance and throwing her weight around because she could. and, of course, all on the taxpayer's nickle. i couldn't even begin to estimate that bill. (my son spent 10 days in tch for emergency surgery -- $73,000! --and all he had was ivs/tpn for a few days)

    another nurse had an idea about how to stop repeat druggie births... just have some phillanthropist (sp) pay them a couple $1,000 dollars to have a tubal - payable upon discharge. it would be cheaper than their next micro preemie. as long as there was a drug test run to document that they were sober when they signed the consent - i'd have no problem with it.

    i'm just a level ii nurse. i don't know how ya'll put up with what you see every day.
  12. by   BabyRN2Be
    Quote from 33-weeker


    the mom visited occasionally, mainly to ask when her baby would be able to go with her to wal-mart.
    not to get too off topic, what is it with some moms and the importance of taking the baby to wal-mart?? i see this a lot. i worked at a home for pregnant teens and they were all excited when they took the baby to wal-mart for the first few times, one took her week-old baby to a hockey game. ugh.

    Quote from 33-weeker
    this was not about baby and right to live - it was about mom, her ignorance and throwing her weight around because she could. and, of course, all on the taxpayer's nickle. i couldn't even begin to estimate that bill. (my son spent 10 days in tch for emergency surgery -- $73,000! --and all he had was ivs/tpn for a few days)
    someone brought up lack of education and what does this have to do with the parents decisions. it can be a little tough when you work with a mom who is trying to convince her boyfriend of the moment that he is the baby's father and that he is small because they didn't give him a hormone in time to make him grow real big. this was in the ed forum. also, it's tough when you have parents who think that the nicu can save any baby because they've heard of a 23 weeker who makes it just fine. they are tired of being pregnant at 25 weeks, induce labor because it can grow up just fine in the nicu, and mom avoids the discomforts of late pregnancy!

    not to mention the price tag. not that this is a price on human life, and i'm talking about that at all. but the cost can be staggering. my cousin, whom i'm very close to, had a cdh baby who spent 5 weeks in the nicu. they had private insurance, but we figured up the total cost one night and just for his care in the nicu, not figuring doctor's bills, surgery, we figured it to be up to $500,000.

    i'm not refering to the children who do make it out with special needs or those who are just fine, but the op was referring to the mom who hardly ever comes to visit, who has unreal expectations about what will happen. of course, it seems like this has touched a nerve with some users and understandably so. what the nurses in this forum are talking about (and i am not one of them), are the ones who really have no hope, while the mom has all the expectations in the world, who rarely visits the child.
  13. by   33-weeker
    no. one cannot put a price on human life. but we, as a society, cannot totally ignore cost issues either. it affects us all. spending money on preventable preemies/drug babies leaves less to go around for babies with legitimate problems. (by legitimate, i mean not a result of breaking the law, or not preventable by reasonable means)

    compassion for addiction aside, the bottom line is that what these drug mothers (who pop out a micro preemie every year at the government's expense) are doing is wrong. they are breaking our county's laws, and moral ones as well. they need to be held accountable!

    i have no problem when my tax dollars go to help some poor family's child who has a ligitimate problem, but these drug mom's are causing these problems by their reckless, criminal behavior.

    i'm all for offerring them good treatment programs and a chance the first time. but for the repeat offenders, what is so wrong with offerring them a choice of hard prison time or a tubal ligation? if they want to keep getting high - so be it - but why must we let them keep hurting their children and our country's economy, and overburddening the foster care system?

    and what is wrong with taking charge of the truly hopeless cases? why are we letting mothers, who obviously don't have a clue - even after countless tries to educate them - keep torturing brain-dead babies who are being kept alive only by the machines. someone needs to step in!

    what ever happened to personal responsibilty and doing what is right?!

    (i think it's called the aclu)

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