Can all parents really make good decisions

Specialties NICU

Published

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, morphine gtt, anitbiots, vessopressors, with a Mom that says no to DNR but does not visit and when she does visit stays 10 min. Does he just stay in this "hellish limbo":madface: . Is there a point or case when someone says "Ok this parent really does not know what is best for this baby" I have only been working in this unit 3 years and have seen this way too often. Why are Dr's so afraid to get the ethics committi involved. Any thoughs on this:( I am really starting to wounder why or where is someone what will make a good decision for a very sick baby like this

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.

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! :banghead:

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.

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) :sofahider

Specializes in midwifery, NICU.

if you can find news, look at the case of Charlotte Wyatt, (UK). Parents fought through the courts after docs wanted DNR on this poor babe. Tragic story, parents won their case, but this week Charlotte will be three years old, still living in hospital as the parents had other children and have now divorced. Father tried to take his own life, unstable for the wee girl to live with, and the mother has her other children to care for and would not be able to manage Charlotte at home. she has visited this babe around three times in nine months, (five miles is too far to travel!) At the time of their fight they felt like it was a victory, but now this poor wee girl is left living in a hospital, with severe disability and foster parents are being sought for her. In hindsight how good was their decision? lots more to this case, sure you will find stuff on net about it.

...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, morphine gtt, anitbiots, vessopressors....

We're not talking about a septic kid or even a micro preemie w/PDA here. Has ANYONE ever seen a kid like this go home - even with severe disabilities?

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.

If you do not work in a NICU, you probably don't have the "educational level and comprehension of the current situation" to understand what the OP is talking about.

nell

If you do not work in a NICU, you probably don't have the "educational level and comprehension of the current situation" to understand what the OP is talking about.

nell

I'm sure most professionals, when faced with a situation in which there is a question of parental understanding, could explain it in plain enough language so that the most simple person would understand that their child has no chance of recovery, and that coding them repeatedly is only torturing them and postponing their eventual death.

Specializes in NICU.

We're not talking about a septic kid or even a micro preemie w/PDA here. Has ANYONE ever seen a kid like this go home - even with severe disabilities?

My old primary was like that. She was 6 months old when she left the ICU the first time only to return shortly thereafter. She is now almost 2, still on O's, still has a G-Tube, has severe CP but she's home! Fortunately mom's an NP and dad's a PT and they have lots of family in the area. Oh and she's a twin. He fared much better oddly enough.

Specializes in NICU.

Oh and I once had a family with known hydrops babe who didn't find out how babies came out until their NICU consult! They were young and spoke a Oaxacan dialect so it was hard to even find an interpreter.

Specializes in NICU.

I think after a while it comes down to quality of life issues. These kids have no voice. We're not heartless NICU nurses, but we hate to see these kids suffering day after day after day. It's incredibly heartbreaking.

Specializes in Looking for a career in NICU.

I agree that the mother may be in denial of how grave her baby's situation is, and maybe it's time for someone like the social worker to sit with her and explain it one more time.

Now for me, a DNR is very different from disconnection of life support. I don't think there is much suffering in a DNR, but disconnection of life support, I have huge issues with, though personal. I know as a future RN this is something I'll just have to accept.

One of these days, I hope, it will be legal for families to "opt" for a type of euthanasia when someone is disconnected from life support or others in vegetative states (like in the Florida case with Terri Sharvio), so death is quick and not prolonged.

Specializes in NICU.
I agree that the mother may be in denial of how grave her baby's situation is, and maybe it's time for someone like the social worker to sit with her and explain it one more time.

Now for me, a DNR is very different from disconnection of life support. I don't think there is much suffering in a DNR, but disconnection of life support, I have huge issues with, though personal. I know as a future RN this is something I'll just have to accept.

One of these days, I hope, it will be legal for families to "opt" for a type of euthanasia when someone is disconnected from life support or others in vegetative states (like in the Florida case with Terri Sharvio), so death is quick and not prolonged.

While I understand what you are saying...

When it comes to NICU patients, sometimes discontinuing life support brings much LESS suffering than a DNR. The vast majority of very very sick NICU babies, if taken off life support, pass away very very quickly. It's not like removing a feeding tube and letting them wither away - it's discontinuing ventilator support which is often the only thing keeping them alive. Others who might survive for longer are able to go home with hospice care and comfort measures. A DNR, however, means that we are still going full throttle with maximum life support, and there is a good chance the baby might never code, and thus will spend a very long time on life support - often with no chance of improvement.

I've been in the NICU for eight years. I have seen a few DNRs in my time where the baby suffers for months before finally coding. On the other hand, I have seen many babies taken off life support, and it is often the more peaceful, humane option in those cases. If the baby passes away quickly, it is obvious that he or she was too sick and it's a relief to see them out of pain. Or if the baby survives for several days/weeks/months, then at least the parents get to spend some time with their child who is finally free from painful tubes and needles.

Just some thoughts from the other side.

i suppose i should clarify my previous comments...

dnr, comfort care, and even turning off a vent for a hopless case is one thing. euthenasia or stopping feedings for a patient breathing on their own is entirely another. i am not in favor of killing the infirm at all.

Specializes in NICU.

Ugh, I'm just remembering a heartbreaking case where we didn't feed a baby. She was born at 37 weeks, mom noticed decreased fetal movement. Babe developed petechiae on her abdomen moments after birth. Gith increased rapidly and abdomen got very dusky. Transferred to us for emergent x-lap. babe had ZERO viable gut. She was taken off support. She received ATC IV morphine until the IV blew. Then changed to nasal Fentanyl. She withered away. Her attending said that this was the kindest way to let her go because dehydration released endorphins.

OMG, I'm totally crying right now. I was about 20 weeks PG with my first when I took care of this beautiful baby. I asked to not care for her again because I couldn't do it without bawling. Her parents were so sweet. It took her 10 days to pass away. I still have a picture of her before she died. Sorry, I needed to get that out.

+ Add a Comment