Any 22 weekers out there?

HyperSaurus, RN, BSN · Jan 3, 2020

2 hours ago, tralalaRN said:
Anyone working in the NICU should be required to work for 6 months caring for former micro preemies in the home (first). The 3 year olds, 10 year olds, 30 year olds. The trachs, vents, autism, severe learning disabilities, seizures, severe cerebral palsy, severe cognitive delays. . the on-going shunt and orthopaedic surgeries - the pain inflicted upon the survivors, the damage to marriages and families. It changes one's perspective dramatically.

Oh, that’s absolutely fair. The two kiddos I’m thinking of are two and four years old. The two year old is mobile, interactive, and no trach. The four year old, I’m not sure about other than that there is a video of the kiddo singing and “helping” mom do dishes. I do also follow a former 23 weeker (the parents were recommended many times to let the baby go, as the baby was severely septic and had huge grade IV bleeds). That kid is trached, g-tubed, completely wheelchair bound, and uninteractive. It’s so sad.

I know that they are very much exceptionalities. The two year old had minimal IVH and mild CLD. I still think that 22week parents should be given the choice (between resusc and comfort care, which comfort care being highly encouraged) and include an explain in real world terms what their kid would be likely facing down the road. For every one miracle 22 weeker we have, there’s 10 (at least) that either don’t make it or have catastrophic defects down the road.

tralalaRN · Jan 3, 2020

When I started my most recent nursing career, I was encouraged to go into the NICU. . I told the MD and a NP, that I could not live with myself knowing how severe the micro preemies turn out far too often, and the devastation left in the wake of their survival. . the pain and rehospitalizations, for far too many. A good friend with a micro preemie who died after 12 years of hell told me "we finally undid what neonatal did to her". . Are there exceptions? Certainly. These are the miracle baby stories held up for the public to ooh and ahh over. When only one side of the story is presented publicly, parents who go into this situation believe their child will be the miracle baby too. NICU health care providers often counter-act saying "we don't know which ones will do well, and which ones don't" as being the reason to aggressively save them all. . honestly - that's a crock. Even those without an IVH can have devastating outcomes due to hypoxia, etc. I know a young adult who breezed through the NICU as a 25 weeker, came home without a monitor or meds, RA. Today, she is on SSI due to her many disabilities.

**NICU Guy, BSN, RN** · Jan 5, 2020

On 1/3/2020 at 9:14 AM, tralalaRN said:
Anyone working in the NICU should be required to work for 6 months caring for former micro preemies in the home (first).

I am not understanding your point. Everyone that works at a Level III/IV NICU has had numerous patients that had poor outcome and realize the life that those kids are going to live. I don't need to be a pediatric home care nurse to imagine what happens when those kids are discharged.

On 1/3/2020 at 9:14 AM, tralalaRN said:
The trachs, vents, autism, severe learning disabilities, seizures, severe cerebral palsy, severe cognitive delays. the on-going shunt and orthopaedic surgeries - the pain inflicted upon the survivors, the damage to marriages and families. It changes one's perspective dramatically

Are implying that the NICU nurses are responsible for those outcomes?

I have cared for many 24 weekers that were discharged without oxygen and taking full bottles without problems. I have also had 32 weekers that had crappy lungs and ended up with a trach and G Tube. You act as if we have a crystal ball and know if a micro preemie (23-24 wk) on a high frequency oscillator vent will be a normal baby or a trach baby. Are you suggesting that if the baby is going to need a trach and a G tube, that the nurses should be advocating euthanasia?

tralalaRN · Jan 5, 2020

I'm suggesting that the NICU is fairly insulated from the real world. The years and decades of pain and suffering inflicted upon families has been well-hidden from the public. Families go into the NICU with unrealistic expectations. . and yes, if you're working in the NICU, this is your choice. Families don't have a choice. The millions of dollars it requires to "save" a 22-23 weeker, and the millions more to support them through their lifetimes, and above all the horrific pain, should make us ALL question the wisdom of this. And yes, I do advocate for passive euthanasia in response to a 22-23 weeker, as well as any other extreme preemie who has a large IVH.

Unfortunately, with the 1980s Baby Doe Laws still in place, this cannot be a reality, but it should be.

**NICU Guy, BSN, RN** · Jan 6, 2020

If your original post was exclusively referring to saving 22wk babies, then I agree with you. We do not have the capabilities to consistently have good outcomes for babies born that young. Maybe in the next 5-10 we will have the capabilities of the artificial womb. https://www.chop.edu/news/unique-womb-device-could-reduce-mortality-and-disability-extremely-premature-babies

Wuzzie · Jan 6, 2020

18 hours ago, tralalaRN said:
and yes, if you're working in the NICU, this is your choice. Families don't have a choice.

I don't know why you are being so harsh on the NICU nurses. They are not the ones who control the decision making. And yes...families DO have a choice. Instead of paying more heed to Hollywood they should be listening to what the actual doctors are telling them. You seem to be suggesting that NICUs shouldn't exist at all. Should we just leave sick babies in the woods for the wolves? You can't guarantee the outcome for any baby, even the healthy ones.

That being said, when I worked Peds/Neo CCT and flight we would not resuscitate any infant <500gms because our physicians felt that infants of that size had a grim outlook and our interventions (intubating with a 2.5 in an airway that was too small to fit it) would cause unnecessary suffering. We would provide warmth, O2 and fluids (within reason) and let nature take it's course. However, if the infant survived more than 12 hours without any signs of impending death we would reconsider our plan of care. It happened once in my career. The infant survived and thrived. While I know that there have been numerous babies less <500gms that survived the reason we chose weight rather than gestational age is because of the conundrum the latter causes. 23 wks vs 23 and 4 days. What do you do? Does the 4 days make that much of a difference in the outcome? We just don't know.

In the end your obvious anger is directed at the wrong people. Aim it, instead, at Hollywood and social media and even at those doctors who think with their egos rather than their heads but don't aim it at the people who are tasked with dealing with the consequences of other people's decisions.

adventure_rn, MSN, NP · Jan 6, 2020

On 1/3/2020 at 9:14 AM, tralalaRN said:
Anyone working in the NICU should be required to work for 6 months caring for former micro preemies in the home (first). The 3 year olds, 10 year olds, 30 year olds. The trachs, vents, autism, severe learning disabilities, seizures, severe cerebral palsy, severe cognitive delays. . the on-going shunt and orthopaedic surgeries - the pain inflicted upon the survivors, the damage to marriages and families. It changes one's perspective dramatically.

On 1/4/2020 at 8:59 PM, NICU Guy said:
I am not understanding your point. Everyone that works at a Level III/IV NICU has had numerous patients that had poor outcome and realize the life that those kids are going to live. I don't need to be a pediatric home care nurse to imagine what happens when those kids are discharged.

I respectfully disagree, @NICU Guy. I do think that NICU nurses (and neonatologists, and NNPs) are somewhat sheltered from the harsh reality of these kids' lives (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).

Before I did my stint in PICU/peds cards ICU, I knew that many ex-micros could have a poor quality of life, and I honestly didn't really get it. In NICU, you have the luxury of sending those kids home, never to see them bounce back, getting sicker and sicker. When they're babies, their deficits aren't as obvious as they are once kids are older (since all you ask babies to do is eat, breathe, and poop). You can take comfort in the fact that maybe the kids you send out may do 'pretty well' on the quality of life spectrum; even if they don't, you never have to come to terms with it.

In peds home health, PICU, etc., you're confronted daily by the harsh realities of peds chronic illness. In NICU, you know that your ex-24-weeker might have CP, pulmonary hypertension, learning disabilities, etc. in the very distant future, but you never have to actually see it realized. In peds, you're helping the exasperated mom (who hasn't slept more than 4 hours a night in over a decade) clean poop out of her nonverbal, contractured teenage daughter's pubic hair, all the while knowing that situation is literally never going to get better (but it can always get worse).

Honestly, having seen that side of it has kind of altered my formerly quite optimistic 'helping babies heal,' 'saving tiny lives,' 'rah rah rah NICU' mentality. I still love what I do, but since my return to NICU I have experienced more ethical unrest about our resuscitation of micros (and how we present their prognosis to families).

In practice it doesn't really matter, since the final decision is up to the family, and families will generally hear what they want to hear. Still, seeing the other side has definitely altered my perspective on why we do what we do.

Wuzzie · Jan 6, 2020

19 minutes ago, adventure_rn said:
In practice it doesn't really matter, since the final decision is up to the family, and families will generally hear what they want to hear. Still, seeing the other side has definitely altered my perspective on why we do what we do.

Having a balanced perspective is a good thing but it still doesn't give us any power over the decisions that are being made. You are very correct in that parents will hear what they want to hear and physicians will keep trying to push the limits of viability. As nurses we can voice an opinion but in the end our hands are tied. For someone to imply that somehow it's the NICU nurse who's to blame for this is galling.

TiffyRN, BSN, PhD · Jan 6, 2020

Back on the initial topic. The unit where I work has been attempting resuscitation on 22 weekers in certain circumstances (good PNC, steroids, singleton, etc. . . ) for just a few years. To my knowledge, this has been attempted a handful of times and only one infant survived to discharge. I have to specify though that "discharge" was really transfer to another facility. The intention of that was the other facility had a unit that helped prepare parents for home care of a trached infant. Also, while the infant was at the transfer hospital, they have suffered repeated episodes of pulmonary HTN.

We were told to expect 90% of 22 weekers to not survive long but that the surviving 10% should have outcomes no worse than 23-24 weekers we are more familiar with. Our unit actually has really good outcomes for our micros so we were hopeful. That hope is now mixed with a bit of reality. The last I heard, the one survivor was still at the transfer hospital though I haven't heard anything very recently. The parents were very aware of the risks including having a background in healthcare. No provider pulled any punches and there were multiple opportunities offered to de-escalate the aggressiveness of the treatment.

llg, PhD, RN · Jan 6, 2020

The idea of forcing all NICU nurses to work peds home care is ridiculous in practical/financial terms. It's an entirely different specialty requiring a totally different set of skills. Implementing such an idea would be prohibitively expensive. It would also be devastating to both specialties. How would the home care agencies finance the constant turnover and resulting orientation needs? By the time the nurses got fully oriented, they would be gone. How would the NICUs find sufficient numbers of nurses to staff NICUs if that 6-month home care requirement would be instituted?

No ... it's just an idea thrown out there that doesn't hold up when you consider the practical realities of implementing it.

And as others have said ... it's not the nurses who are making the decisions. Most of the time, it is the parents -- with input from the physicians.

tralalaRN · Jan 6, 2020

It was not my intent to "blame the nurses" - it's the NICU system as a whole, plus the hospital PR department that wants to always couch saving one pound fetal/infants as "miracles". .rarely is the really challenging other side shown. There is a whole lot of money behind saving micro preemies. . $10k per day approximately for the NICU? Then there are the multitude of follow up clinics - trach clinic, CP clinic, Peds neuro, Peds neurosurgery, dietary, g-tube. It keeps them coming back . .Neonatology as a whole wants to bask in the glory of saving micro preemies, without really wanting to know what the future holds. Did you know that many parents (particularly mothers) suffer from neonatal PTSD? It's a war zone for them. Seeing what is done to their infant. Some have referred to it as "torture". . it's the reality of the NICU. Up until the late 1980s, many preemies were operated on without anesthesia. Heart and neuro procedures even. By presenting only the miracle baby side to the media, parents come into this with unrealistic expectations. Many feel we've gone to far, and in this extremely volatile health care system as a whole, cuts to Medicaid and other social services, cuts to educational programming - particularly for the severely disabled - we are asking too much of parents (and society) to deal with. It's been said parents have choices? But do they? The Baby Doe Laws do not appear to support parental "choice". . and those laws are still in place. One family in my area had 22 weeker twins 20 or so years ago. They both passed shortly after being born. They were devastated, but they went on to have 4 full term healthy children. Families with children who are severely disabled are extremely stressed and isolated. They don't get to go home after an 8 hour shift or a 12 hour shift. Perhaps we should advocate for good neonatal survivor institutional care to help lift the burden from families.

tralalaRN · Jan 6, 2020

adventure rn Yes, you articulated so well, the point I was trying to make. Thank you.