What becomes of them?

[Penelope_Pitstop]

I don't know if this should be in the Pediatric forum vs. here but I suppose it can be moved if need be.

I did my senior clinical preceptorship in a Level III NICU six years ago. At the time I thought (erroneously) that neonatology was my passion. Anyway...

I saw a handful of full term babies who suffered some sort of anoxic event during labor and delivery and thus were left presumably neurologically devastated. A few of them had head cooling done at another facility and were in our NICU (it was strictly a surgical NICU and everyone was from an OSH as there were no deliveries there) to have G-tubes placed and then monitored while on them.

These babies were chubby beautiful babies who appeared no different from the average newborn. They weren't the 26 weekers developing NEC or the babies with congenital heart defects. Those babies had rough roads but once they got over their "humps," had somewhat predictable courses.

As for the neurologically devastated full termers, what happens to them? I mean, do they usually end up at home with round the clock care, or go to a facility, or maybe *do* improve? I always wondered about their followups. One neonatologist had commented that "we just now have a cohort of 20 somethings who suffered these anoxic injuries...before them, these babies weren't saved" but he didn't know much about their care or prognosis.

Just an adult medsurg nurse...wondering!

Thanks in advance, folks!

[canned_bread]

You raised some very good points. The impact on the family is incredible. I do wonder, myself, if I have it "in me" to be such a great mum as I see the parents around me that are like an army for their child.

How is a seizure picked up inutero? I did not know that was possible.

[NotReady4PrimeTime, RN]

How is a seizure picked up inutero? I did not know that was possible.

Seizures are clearly visible on ultrasound. They look very different from normal fetal movements.

[NeoPediRN]

I work on a NICU/PICU stepdown unit full of the kiddos you're talking about. The unit is often used for patients in transition to go home who aren't stable enough, or older kids who bounce back because they're always in and out of the hospital with some sort of infection. The older ones tend to have seizures and/or CP and severe developmental delay. Some are more high functioning but all are delayed. I would say about 50% are truly neurologically devastated on ventilators with total care. Many end up getting dumped in pedi longterm care (we are "lucky" enough to have several of them in my state). 100% of the parents are overwhelmed and fried. I strongly disagree that we should save all babies if we can. There is zero quality of life in being a vegetable full of stage 4 decubs being tube fed and artificially ventilated. They will end up suffering and dying long slow painful deaths. Neurologically devastated kids often turn into neurologically devastated adults, often alone in a nursing home for the rest of their lives. I'm sure my opinion will not be popular, but it is the truth and something I feel strongly about working with these kids on a daily basis.

[redmielita]

I used to do in home care for a lady like this. She was kept at home until 20 or so, when she moved into her own apartment with 24-hour aides. The family just took care of her themselves until she got too large to move without assistance, around age 16. She was quadriplegic but had no mental disability outside of some learning disabilities.

[jpeters84]

As a NICU RN and a foster mom to a Bilateral Grade IV and PVL baby let me tell you that sometimes they surprise you. I was told I was taking this baby home where she would most likely die and five months later she is a crawling, cooing, smiling ball of love. It's rare, but sometimes a kid can surprise and a miracle can happen. It's not always depressing endings to these stories.

[ToughingItOut]

I've recently been caring for a baby being cooled on a cooling blanket. He's a big, beautiful term baby, and his parents are so sweet...I want more than anything for him to be ok. I've seen a few concerning neuro movements and possible seizure activity, but it's so hard to know what the long term prognosis is for these children.

[ToughingItOut]

That's incredible jpeters84! You just made my day. :)

[umcRN, BSN, RN]

I've recently been caring for a baby being cooled on a cooling blanket. He's a big, beautiful term baby, and his parents are so sweet...I want more than anything for him to be ok. I've seen a few concerning neuro movements and possible seizure activity, but it's so hard to know what the long term prognosis is for these children.

I just have to ask...why is this baby being cooled without an EEG?

All our coolers are required to have a 72 hour video EEG that starts as soon as possible and stops after the baby is warm. That way we can see what the brain activity is like and treat seizures if necessary because everyone knows you can't treat seizures in a neonate by clinical assessment only (as they may have no clinical signs of seizures or they may look like they are seizing but not be). We have neonatal neurologists that monitor these EEG's and let us know when the kiddo is seizing (or not having any brain activity).

[ToughingItOut]

Interestingly, that baby did end up having a continuous EEG (for only 24 hours), but only because we had noticed some suspicious seizure-like activity and possible posturing and a dose of Ativan that had helped. I read through our protocol, and only a stat HUS within the first 36 hours is recommended (one was not done on this baby) and an EEG is left up to the team's discretion. BUT, since they did order a 24 hour continuous EEG on this pt, they will repeat another EEG once he is fully warmed.

Apparently, the first EEG "looked good." I checked on him last night and he was fussing a little and going to town on his pacifier (not just a weak suck, but vigorous) which I took as a good sign, but he still seems a little lethargic. What do you guys think? I just wish we knew more.

[anon456, BSN, RN]

I work on a unit that specializes in trach/vent kids. We have a large handful that are former micro-preemies or babies who had birth accidents. Obviously most of the ones who come to our floor, having graduated from NICU and some even into their teens, are more severely affected. We get some NICU grad babies (on our floor mostly for teaching until they get to go home) who we think look terrible, will never be right after all they went through, and a few of them end up doing great. I have been on the unit for over a year now and have seen tiny sickly babies who have to be bagged every time they pass gas grow up to be happy and social and have okay qualities of life. They may be developmentally delayed and vent/gtube dependent but they seek out and enjoy social interaction, play, and feel love.

Others (most) turn out to be terrible, horrible cases. The bigger kids who come in completely neuro devastated, contracted, neuro posturing, tremors when being touched, seizures if they even have that much brain left to seize, and suffering from all the things that come with being total care their whole lives- severe scoliosis, bedsores, ileus, neurogenic bladder, etc.

With this second set, I sometimes wonder why they are allowed to keep doing intervention after intervention on them. But . . it's not my decision. And, I guess I have seen that small percentage of ones that do okay in spite of a very difficult start, that it's hard to predict until they get to a certain stage of development how well they will do long-term.

We had a NICU nurse float to our unit and while she only could care for the babies, she was able to see some of the older (and much older in some cases) NICU graduates and she had a very very hard time dealing with the fact that some of the ones that are saved grow up to have horrible qualities of life. She acted like she was in a house of horrors and I think it may have been the first time it dawned on her that these very sick and broken babies do grow bigger but remain about the same neurologically as when they left NICU. Instead of being little and cute, they become big enough to physically go through puberty, have menses and acne, have misaligned and horrible looking teeth, smell bad if not bathed quite often (sometimes twice a day), be orally suctioned very often, and are so contracted that it's hard to do diaper changes on them, and touching them at all stresses them out but we have to do our cares.

Getting back to OP's question-- a large percentage of kids on my unit bounce between long term care and our unit. We have several LTC in our area. The kids hardly ever get visitors or even phone calls. The rest live with families and the parents are in various states of attachement with the kids, from very and they receive good care at great sacrifice to the family, to not at all, and it's okay to text while we are bagging their child.

When they turn 18 it is up to the MD to decide if they want to keep treating the patient or not. We have had a few patients in their 20s and the oldest I ever saw was in their 40's. Others, once they age out we never see them again. I do know that since we have a small patient: nurse ratio compared to the adult world, they probably get better care with us than they will when older. Many of the parents of older kids have expressed anxiety about this.

Sorry to be so negative. I enjoy my unit very much and have found a special niche caring for these patients-- because someone has to, they are alive and need care and it might as well be someone who can handle it. But it's also reality that it's not such a pretty picture once they leave NICU.

[TiffyRN, BSN, PhD]

Anon456:

Thank you so much for your response and insights. It's so important to see the full spectrum. I like to follow the public blogs of former patients (I don't am super hesitant to connect through FB). On there I can see a pretty wide spectrum of life after the NICU, from following families that experienced loss during that time period (and how the pain persists for years), to children with no residuals to mild to severe impairments. It's really great to get the parent's insights as to their experiences and as publicly searchable blogs, in my non-legal professional opinion, it is fine to share these websites with parents who have questions (though I've never actually done this).

Just this morning I visited the blogs of some former patients that are living perfectly normal lives, some that struggle with mild disabilities, some who suffer severe impairments and some who had passed away and how their parents live on after that. One parent's site followed her son through 3 years of a eventually fatal disorder. One way these parents have coped is by adopting two severely disabled children who had lived in foster care most of their lives. I can be pretty cynical but this family's story inspires even a crusty old nurse like myself.