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!

[NicuGal, MSN, RN]

We do body cooling and I have yet to see one that doesn't have any issues....the last 2 we did, we should have never initiated the protocol....both are pretty devastated These kids end up on on comp care floor or PICU a lot due to all systems having issues. Like someone said, in the heat of the moment the fellow decides to cool and they really don't meet all the criteria

[Penelope_Pitstop, BSN, RN]

Like someone said, in the heat of the moment the fellow decides to cool and they really don't meet all the criteria

What usually is the criteria?

And in case anyone is wondering what piqued my interest in this all of a sudden, I recently interviewed for a position on a peds floor that has a lot of kids who are on vents around the clock. They are admit for acute issues to this floor, and many of them are trached. I was wondering if these happened to be the kids with perinatal asphyxia a lot of times.

[NicuGal, MSN, RN]

A lot of the kids you'd see are most likely kids that had super bad lungs and needed trached, such as micronates around 23 weeks or so. They end up on long term care because the parents can't do it and most insurance companies won't pay for nursing care for longer than 8-16 hours in the home. We don't see a high volume of asphxia, but more preemies with neuro and lung problems.

[NotReady4PrimeTime, RN]

I worked in a pediatric ICU for nearly 15 years. Many of the patients that we admit are the kids you're talking about. They come in for seizures (outside of their "normal" pattern), aspiration pneumonia, respiratory viruses and urosepsis, typically. We see some of them with almost predictable frequency and at predictable times of year. The ones that do live at home are typically breathing spontaneously but with airway protective and airway clearance issues and are GT fed. There are some who live in LTC facilities and may require non-invasive mechanical ventilation or are trached, +/- ventilated. They may smile and seem to recognize family, or they may do little more than lay in bed and breathe. Most of them are completely non-verbal and often spastic, so are on baclofen and have had multiple orthopedic surgeries. Most of them require extensive positioning aides and their wheelchairs may cost in excess of $5000. Frequent ICU stays really tax the system in terms of access to care for other children; the economic impact of these admissions is high. But for most of these children's families, they're dearly loved and valued members of the community and so we do what we do... knowing that we'll see them again and again.

[umcRN, BSN, RN]

Criteria may vary by hospital but at my hospital there is a set protocol. It starts in the deliver room (which we don't have, all our kids come in from the outside).

-was the baby down before birth? (decels/loss of HR/unable to find HR when mom comes in?/prolonged rupture)

- what does the kid look like coming out? apgars (a 0/0/0/1 really shouldn't be cooled, but I've seen it happen), how long is resuscitation? then look at labs, a cord pH of less than 7 should be a disqualifier (but that doesn't always happen)

- Neuro exam upon admission. Are they flaccid? or hypotonic? jittery/agitated? or seizing? what are the reflexes like?

- Timing - cooling must be initiated within 6 hours of birth for optimal neuroprotection. This is probably the only hard and fast rule I've seen followed strictly

There is of course a solid protocol for each of those categories with each criteria the infant does or doesnt meet leading to cool or not to cool but of course like I said protocol is not always followed

The last cooler I admitted mom presented to hospital on a friday for decreased movement at 42 weeks. It took a long time to find a HR but they found one. Told mom if she didn't go into labor over the weekend they would induce Monday. Monday came and mom went in for induction, couldn't get a reliable HR, stat c-section, baby resuscitated for 90 minutes (and who knows how long she was down in utero), transferred to us with a pH

It's these situations that make me feel i will never let myself go post-term when I have kids because the post-termers seem to be the ones we cool the most.

[canned_bread]

My view (and this is a personal view of course, I haven't read any studies on this) is that it varies. We all know the brain is plastic, and with intensive therapy over time these children can, in varying degrees, live fairly independent lives. A friend of mine was a 26 weeker twin preemie. She is now 22 years old. She cannot speak, she has right sided hemiplegia, she struggles to swallow. But she can walk. She can feed herself. She can sign (a variation of AUSLAN and ASL). She is brilliantly intelligent.

And then there are the cases I used to work with at a young adult LTC facility where the brain injury is catastrophic...and they will live in a home for whole lives, or perhaps not live to their 20's due to aspiration or some other complication.

BUT ultimately, I think if we can save, we ought to, and then give them the best we can to get that plastic brain moulded into the best it can be. Because we just don't know if they will turn out like my friend, or like the young adults I worked with in the LTC facility.

I guess we have sicker people living now than we ever did before, and people living longer than we ever did before, but inversely we have healthier people than we ever did before... an interesting great divide we are creating!

[umcRN, BSN, RN]

BUT ultimately, I think if we can save, we ought to

Oh I disagree with this on so many levels, but that's probably for another thread...

[KelRN215, BSN, RN]

Oh I disagree with this on so many levels, but that's probably for another thread...

Me too...

[stopthepenguins6]

My husband's niece suffered a seizure in the womb, and was diagnosed with hydranencephaly. She was breathing on her own, despite having very little that had developed of her brain. The doctors wished to withdraw care and basically let her starve to death. His family refused, and she is 17 today.

I can come at this from both sides of the debate of "If we can save, we ought to." On one hand, she is now 17, she loves to laugh, but that's about all she can do. She knows who I am, even if she can't speak, and she knows who she does and doesn't like. You can ask her questions and she'll make her "yes" noise or her "no" noise, and she loves to hear certain words. She is their little miracle child, and they love her all the more for it. She is now close to 6 feet tall, is tube fed, and lives on the couch. You will never see someone taken care of as well as that girl is. She has someone next to her 24/7, and I mean that in a literal sense. Someone always stays with her in case she chokes and needs suction or to track her seizures, etc.. On the other hand, It has changed the lives of everyone around her. They can't all go on vacation together because she can't go...they can't pack up and go to the park for the afternoon because she can't handle it, she has to sleep in the bed with them in case she seizes in the night or starts choking, etc.. I ask myself if I were in the same situation if i would be able to handle it. As a healthcare worker I look at the situation and wonder to myself if the decision they made 17 years ago to not withdraw care was worth the cost. But if you ask them, they'll say it's hard sometimes, but they'd gladly give up everything for her, even if she is a 24/7 total care kind of child.

In reference to your question earlier about what happens when they grow up and are no longer in pediatrics, well, that's a question many of the families of these kind of children would like to know. 20 years ago, these children didn't stay alive, either by nature or by withdrawal of care. So we are now in a transition stage. The doctors that have been caring for these children as pediatric patients for their entire lives will no longer be able to care for them as adults any more. When our niece gets sick, in a couple years she'll no longer be able to go to the children's medical center where she has been treated her entire life, having had dozens of surgeries, but will have to get a new set of doctors who know nothing of her diagnosis and how to treat them, because up to this point, these children never survived. It's a scary thought for us!

[NicuGal, MSN, RN]

I also sooo disagree with the if we can we should theory. The general public just doesn't know what it will be like, and the majority of our kids that are dependent for all their care never go home. They end up in nursing homes for peds because they can't be rehabilitated and we don't have any near us so these kids end up miles from their families. There are the rare family that sacrifice every little thing for their child, but in reality, most of our clientele are incapable of taking care of these medically fragile and complex kids at home, and many of them are pregnant soon after and never come to see the baby left in our unit. We will have these kids sometimes up to 1 year because they continue to be too unstable to send out or home. How sad is that? That is not a life, to live in a hospital. Many of them come back again and again and it is the one of the saddest things I have ever seen. Sometimes I see these kids, and it makes me not like my job so much. It is so unfair to these children. And who is going to care for them if something happens to their parents? That saddens me even more. There are days I do question the ethics of what we do...where do we stop....they are bringing 22 weekers back to us, we have even had kids that we know are less than 22 weeks, and they live a few days, what I am sure is a miserable exsistence...and why....because we can of course. Even with modern technology, we can not duplicate some things from in utero.

Sometimes, there are worse things than dying.

[Elvish, BSN, DNP, RN, NP]

Knowing what I know now after working in the field (and I don't want to ever be in this situation, believe me), I think my criteria have changed for at what point I'd want my infant resuscitated. It surely wouldn't be at the 23-week mark, and probably really not until about 26-27 weeks. That may sound cruel, but not more cruel than poking and prodding and intubating and oscillating and brain bleeding and even then there are no guarantees? Not to me it isn't. This isn't an indictment of anyone who has chosen/would choose differently, but it feels way more cruel to me to keep a tiny baby alive like that than to just hold them and let them go peacefully.

There is a reason the 23-24 weekers that go on to have no deficits are called miracles....because they don't happen much.

[umcRN, BSN, RN]

Knowing what I know now after working in the field (and I don't want to ever be in this situation, believe me), I think my criteria have changed for at what point I'd want my infant resuscitated. It surely wouldn't be at the 23-week mark, and probably really not until about 26-27 weeks. That may sound cruel, not more cruel than poking and prodding and intubating and oscillating and brain bleeding and even then there are no guarantees? Not to me it isn't. This isn't an indictment of anyone who has chosen/would choose differently, but it feels way more cruel to me to keep a tiny baby alive like that than to just hold them and let them go peacefully.

There is a reason the 23-24 weekers that go on to have no deficits are called miracles....because they don't happen much.

yes! I tried to explain this to my dad once and he went on and on about how medicine would never advance if we didn't continue to try pushing it's limits. Ahh! Not on my baby OR my own life! No thanks! I don't have kids yet but I can't honestly see myself wanting to resuscitate anything under 28 wks...or a hypoplast for that matter. Yes I love my job and taking care of these kiddos but they go through so much and most of the time, in the end, we wonder for what?

I had surgery a few months ago and in pre-op the guy in the bay next to me told anyone who entered not to take him off life support "no matter what" after his surgery (he was having some kind of bypass from the sounds of it) he was very adamant that he wanted the machines for as long as possible. I immediately turned to my parents and said "don't you dare leave me attached to a ventilator for years on end if they tell you it's not looking good" (I was having brain surgery). Not the way I would want myself, or my family, to spend the rest of my life.