Any 22 weekers out there?

tralalaRN · Jan 6, 2020

And llg - My point was, it would give one a healthy balance to spend some time in the homes, community, school system, social service system (and the PICU as adventure rn described above) to get an understanding of what reality is like beyond the NICU for micropreeemies and their families. I wasn't advocating for NICU nurses/ MDs etc to be switching back and forth between working in the NICU and working in the community. That would be ridiculous. I was suggesting it would be nice to get a well-rounded perspective of what we're doing to these kids and their families long-term. . so there is more of a broader understanding of survival beyond the doors of the NICU. I believe this would make for a more compassionate NICU caregiver in the long run, don't you?

adventure_rn, MSN, NP · Jan 6, 2020

2 hours ago, tralalaRN said:
And llg - My point was, it would give one a healthy balance to spend some time in the homes, community, school system, social service system (and the PICU as adventure rn described above) to get an understanding of what reality is like beyond the NICU for micropreeemies and their families. I wasn't advocating for NICU nurses/ MDs etc to be switching back and forth between working in the NICU and working in the community. That would be ridiculous. I was suggesting it would be nice to get a well-rounded perspective of what we're doing to these kids and their families long-term. . so there is more of a broader understanding of survival beyond the doors of the NICU. I believe this would make for a more compassionate NICU caregiver in the long run, don't you?

I don't honestly know if 'seeing the other side' has made me a "better" NICU nurse; if anything, it's just made me a more jaded one.

Like I said, I don't know if it really helps the babies or the parents for nurses to know what's on the horizon for some of these kids. The parents will make the decisions they're going to make, and as a bedside nurse, (for better or worse) I really have relatively little part in that big picture decision-making process. Unlike the providers, I'm not explaining the baby's long-term prognosis, giving families options about DNRs, consenting families for different types of interventions, etc. By the time I'm actually talking to families, I'm giving them education and anticipatory guidance about what they've already decided, sometimes on decisions they several made months ago (i.e. "you wanted to take heroic measures 4 months ago, so now we're learning about trachs").

I actually wonder if it would be most helpful (and practical) for this 'exposure to the chronic side of preemiehood' concept to be incorporated more prominently into NNP and neonatologist education. Unlike nursing, they're the ones actually giving prognoses, signing consents, updating DNR status, etc. NICU teams, like much of healthcare, have a tendency to work in a silo. If providers had more exposure to the long-term, real-life, exhaustingly difficult lives that some these families lead, they might be less cavalier about pushing to resuscitate micros earlier and earlier.

Wuzzie · Jan 6, 2020

16 minutes ago, adventure_rn said:
I actually wonder if it would be most helpful (and practical) for this 'exposure to the chronic side of preemiehood' concept to be incorporated more prominently into NNP and neonatologist education. Unlike nursing, they're the ones actually giving prognoses, signing consents, updating DNR status, etc. NICU teams, like much of healthcare, have a tendency to work in a silo. If providers had more exposure to the long-term, real-life, exhaustingly difficult lives that some these families lead, they might be less cavalier about pushing to resuscitate micros earlier and earlier.

This I could totally get on board with. That was my beef with the other poster. Like so many aspects of nursing we have zero authority and all the responsibility for dealing with the messes other people make. The NICU nurses are caught right in the middle of this.

tralalaRN · Jan 6, 2020

All the responsibility for dealing with the messes other people make? I would say that is not true. Your shift ends, your career can change. Parents of former micro preemies who face a life time of severe disability and medical fragileness however, don't have that choice.

llg, PhD, RN · Jan 6, 2020

I've always thought that more information about such crucial care decisions needs to be given to the general public in places such as ... high schools, birth preparation classes, etc. so that families are better prepared to make such decisions.

Years ago, I used to give tours of a NICU to high school students, parenting classes, pre-birth classes, etc. Virtually everyone in those classes was in denial that they could have a baby there someday and be faced with difficult decisions. I used to try to shake them up a bit and get them to think about "what if?" I tried to make them see that becoming a parent wasn't just about cute, cuddly, health babies. Were they really prepared to handle the hard decisions that sometimes, needed to be made? For some, it obviously went right over their heads. But for others, my "tour and comments" seemed to really make them think.

I want to see more of such learning experiences for young adults and anyone who might be advising them (clergy, counselors, grandparents, etc.)

And I don't think wasting resources on forcing NICU nurses to spend any appreciable amount of time in follow-up care would change many people's minds. Most NICU nurses I have known have already felt that trying to save the smallest and the sickest is not a good idea. They are often the first one to say, "Let's let this poor little baby die in peace."

tralalaRN · Jan 6, 2020

Yes, there are definitely things worse than death. The general public is never faced with the ethical dilemmas in the NICU. And how ironic that it is probably the most ethically fraught area of medicine of all! The Baby Doe Laws should never have come to be, and should be rescinded to make way for honest discussions with families who are blindsided by this. Babies who somehow survive the NICU seemingly intact - (I say seemingly, because I know of a micro preemie who was dx with autism at age 16, and will never live independently). . should not be the only ones shown to the public through hospital PR departments, the Children's Miracle Network Telethons, etc. The media is a powerful force. Likewise, I've seen neonatologists get mighty angry to suggest what is going on in the NICU is less than pretty spectacular. It's the worst kind of gaslighting. Helen Harrison, medical researcher, author of The Premature Baby Book, and parent of a preemie (CP, autism, etc) was a brilliant woman who spoke and wrote volumes on neonatal ethics and treatment of infants and parents. She was often severely attacked by neonatologists. I've seen parents attacked for speaking the truth about how difficult their lives are with former micro preemies. Silenced, shamed for telling how difficult and pain-filled their child's lives are, and domino effect - their own lives. Bankruptcies, loss of career, loss of marriages, family struggles. The choice should be the parents, but in many cases, it is not.

adventure_rn, MSN, NP · Jan 6, 2020

20 minutes ago, tralalaRN said:
Yes, there are definitely things worse than death. The general public is never faced with the ethical dilemmas in the NICU. And how ironic that it is probably the most ethically fraught area of medicine of all! The Baby Doe Laws should never have come to be, and should be rescinded to make way for honest discussions with families who are blindsided by this. Babies who somehow survive the NICU seemingly intact - (I say seemingly, because I know of a micro preemie who was dx with autism at age 16, and will never live independently). . should not be the only ones shown to the public through hospital PR departments, the Children's Miracle Network Telethons, etc. The media is a powerful force. Likewise, I've seen neonatologists get mighty angry to suggest what is going on in the NICU is less than pretty spectacular. It's the worst kind of gaslighting. Helen Harrison, medical researcher, author of The Premature Baby Book, and parent of a preemie (CP, autism, etc) was a brilliant woman who spoke and wrote volumes on neonatal ethics and treatment of infants and parents. She was often severely attacked by neonatologists. I've seen parents attacked for speaking the truth about how difficult their lives are with former micro preemies. Silenced, shamed for telling how difficult and pain-filled their child's lives are, and domino effect - their own lives. Bankruptcies, loss of career, loss of marriages, family struggles. The choice should be the parents, but in many cases, it is not.

I hear you, and I feel as though I have a decent understanding of just how bad things can be.

Here's the problem: We can never say, with absolute certainty, that a baby is going to have poor outcomes. We can only give a range, from best possible scenario to worst possible scenario.

Statically, some micros are going to do better than average. I've known old-school NICU nurses who cared for 25-weekers 'back in the day' when that was the 'cusp of viability' and when the technology was much less advanced--some of those former 25-weekers are living full satisfying lives, attending graduate school, caring for kids of their own, living independently.

Statistically, some micros are going to do way worse than average. Some will have tons of complications, never walk, talk, feed themselves, have higher cognitive function. Their lives, and the lives of their families, are going to be extremely difficult, and I'm sure some of those families wish that the NICU had been 'more honest with them' because they'd never wish this life on their child if they'd known how bad it could be.

But the thing is, we have no way of knowing which kids will thrive and which will languish. Usually, be the time we do know, the ship has sailed and it's way too late to withdraw.

I've seen several kids (both micros and congenital anomalies) where neonatologists told the family that 'there's a 99% chance that your child will come home with a trach,' and they went home on room air. One in particular was a 23-weekers with Grade IV IVH where the NICU team told the family, 'We recommend you withdraw: If he survives, your baby will very, very likely do poorly, need a trach/vent/g-tube, never walk or speak, never recognize your face, etc.' Guess what--that baby is home, learning to speak, feeding himself, room air, walking with a walker. Yes, he'll probably have mild/moderate CP and learning delays, but the family is grateful that he's done as well as he's done. They're actually pissed at the medical team for painting too grim of an outcome and recommending that they withdraw.

So yes, we should tell families that there's a real possibility that their baby might need a trach, g-tube, shunt, several surgeries, expensive life-long nursing care, etc. But we also have to tell them that there's a possibility that they won't need those things, and there's no way for us to predict if their baby will fall into the 'doing well,' 'doing ok,' or 'doing poorly' category.

Unfortunately, nearly all parents who hear those odds will hope that their baby will be the miracle baby who falls into the 'doing well' category. Even if you tell them that there's a 5% chance that they'll do well and a 95% chance that they won't. Many parents feel that if they don't do everything, they're 'giving up on their child.'

Honestly, we have parents all of the time who say, "We want to resuscitate our 22-week/300-gram/Trisomy 18/anencephalic/etc. baby, and if you won't we'll find somewhere that will." That means that 10 other hospitals have already told them "Your baby will die or live a miserable life," but they don't want to hear it. When we do resuscitate those kids, we very clearly tell parents that if the baby survives, they might need a trach/vent/g-tube/shunt/surgeries and need lifelong invasive medical care. And if their child goes on to have a miserable life, maybe one day they'll resent the doctors. However, it isn't a matter of misinforming the parents, it's a matter of the parents not being ready to hear it.

I only wish that providers would stand together and put a hard stop to say, "No, we won't resuscitate 22-weekers," because when they do resuscitate 22-weekers, they set the precedent for families that their baby could be the 1 in 100 miracle baby that they read about on Facebook. Unfortunately, many academic centers was to be 'cutting edge,' and once they start resuscitating 'hopeless cases,' it creates a new standard of care. Therefore, if your team refuses to provide that care, the family has grounds to sue because other centers are willing to do it.

@tralala we had a really interesting discussion about this topic over the summer that you might find enlightening:

babyNP., APRN · Jan 6, 2020

I think it’s also important to keep in perspective that most NICU admissions are not micropreemies with high risk for bad outcomes. The vast majority of NICU babies do just fine and have a relatively normal life afterwards.

In the meantime we are better at saving the micropreemies but not better at preventing co-morbidities. I think we’ve reached the limit of what we can do outside of an artificial uterus- which is the next step in 5-10 years (NICUguy posted a link about this earlier). The idea is that you get the 23-24 weekers growing in an artificial uterus for a month or two to prevent the severe co-morbidities.

adventure_rn, MSN, NP · Jan 6, 2020

1 hour ago, llg said:
I've always thought that more information about such crucial care decisions needs to be given to the general public in places such as ... high schools, birth preparation classes, etc. so that families are better prepared to make such decisions.
Years ago, I used to give tours of a NICU to high school students, parenting classes, pre-birth classes, etc. Virtually everyone in those classes was in denial that they could have a baby there someday and be faced with difficult decisions. I used to try to shake them up a bit and get them to think about "what if?" I tried to make them see that becoming a parent wasn't just about cute, cuddly, health babies. Were they really prepared to handle the hard decisions that sometimes, needed to be made? For some, it obviously went right over their heads. But for others, my "tour and comments" seemed to really make them think.
I want to see more of such learning experiences for young adults and anyone who might be advising them (clergy, counselors, grandparents, etc.)

I feel like social media has made that so much worse.

People whose kids have done well are the ones shouting from the rooftops that miracle babies exist, and they're glad that they chose to aggressively resuscitate with heroic measures. They're the ones on Instagram, with blogs and podcasts, featured in People Magazine. They're the parents who founded the "American [Random Anomaly] Society," and are facebook messaging with the parents telling them that they should sue if our medical team won't treat/resuscitate. People want to tell their happy stories, and miracle babies are happy stories.

Meanwhile, if you've got a disgruntled, exhausted parent who wishes in retrospect that they hadn't resuscitated, they're not going to shout it from the rooftops. No parent is going to get on a soapbox and say "Our lives are exhausting and miserable and I wish I'd never chosen to keep my child alive. Please, come into our home and watch as we change the adult diaper of my incontinent son, which we do 10 times a day so he doesn't develop pressure ulcers."

Parents can use the internet to reinforce all of the good outcomes they've heard, and there are relatively few personal accounts of just how bad 'bad' can really be.

It's important to inform prospective parents that child-rearing isn't all fun and games, but I feel like that's just the tip of the iceberg.

But what's the alternative? Take all prospective new parents (or the parents of 22-weekers) on a field trip to long-term care pediatric vent farms to gawk at the disabled kids? No matter what, parents aren't going to fully grasp the reality of living with a trach/ostomy/whatever until they're actually living it.

Unfortunately, the truth is that those outcomes can happen to anybody's child (i.e. a 5-year-old drowning victim or a 10-year old in an MVA). Part of parenting is realizing that that could be your child, and many parents aren't willing to give up, even when the entire medical team is vehemently telling them that they should, like this heartbreaking, incredibly frustrating case:

https://www.nbcnews.com/news/us-news/appeals-court-grants-order-keep-texas-baby-life-support-n1110381

I apologize if my tone is a little harsh (I actually really admire your insights and follow your posts closely @llg), but like I said, seeing these kids' quality of life first-hand has made me pretty jaded and frustrated. I often feel like there is no good answer, and that's why it sucks so much.

I also feel that this whole discussion is very abelist; if parents feel that their children's lives have meaning and value even if they have severe disability, then who are we to say that they're wrong? I've seen some families (the same exhausted ones providing 24-hour care to 10-year-olds with the function of an infant) who still feel that it's all worth it because a few times a day, the child smiles at them. For them, that's enough; they're the ones living it, not me, so the choice should be up to them.

babyNP., APRN · Jan 6, 2020

I agree with the ableist comment. A neo pointed it out to me a few years ago- while we do need to provide a realistic picture, there are many families who want to take home whatever comes out of the NICU. And in the years that pass they are happy with their decision. I don’t see it as our place to tell a parent that their child isn’t worth living when it can be so subjective. We might refuse certain treatments that are unethical or tell them that we will follow medical guidelines in not resuscitating. But what is devastating to one family may not be to another.

now is this most parents’ perspective years on with a kid with multiple severe co-morbidities? I would hazard not but that doesn’t mean we shouldn’t allow them a choice. Parents are ethically considered the best surrogate in the decision making process for their child and it is our job to aid them in this process by helping them make informed decisions.

**NICU Guy, BSN, RN** · Jan 7, 2020

11 hours ago, adventure_rn said:
especially if you work in the type of NICU that ships kids out to PICU as soon as they're big and old enough for procedures like trachs)

Unfortunately for my unit, they are not shipped out to PICU. We have had numerous kids celebrate their 1, 2, and even 3rd birthdays with us. We have one pediatric facility that takes those patients and they have a 1-2 yr waiting list. Thankfully, we have several nurses that choose to care for those patients to give them continuity and familiarity.

Wuzzie · Jan 7, 2020

13 hours ago, tralalaRN said:
All the responsibility for dealing with the messes other people make? I would say that is not true.

Oh but it is for a time. Our shift might end but we go back day after day, year after year knowing damn well that the decisions made by OTHER people are risking a lifetime of suffering for these children and we aren't allowed to say a word that contradicts the parents' or the physicians' decisions. It IS a crisis of conscious for the nurses and I doubt you would be able to find even one who feels differently. But we can't get rid of NICUs or children with bright futures would also die. That collateral damage is unacceptable. And I will say this again it is NOT the nurses' faults because they choose to work there and rubbing their noses in the aftermath of other people's decisions will not do a damn thing.