What becomes of them?

[Penelope_Pitstop, BSN, RN]

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!

[traumaRUs, MSN, APRN]

We have a pediatric NH in our area that is full!

[Double-Helix, BSN, RN]

There are pediatric nursing homes and pediatric rehab facilities that will care for chronically ill children for long periods of time. Many of these facilities also provide respite care to families that care for their child at home. Respite means that the family can bring the child to the facility and drop them off for a short term period to take a break.

In addition, home care agencies can provide skilled nursing care to the pediatric patient in their home for up to 24 hours per day. With the advancement of ventilator and other medical technologies, and the increased accessibility of this equipment for the home setting, more and more chronically ill children are being cared for at home, by the parents with the assistance of home care nurses.

[Penelope_Pitstop, BSN, RN]

We have a pediatric NH in our area that is full!

So what happens when the patients aren't pediatric anymore?

[Penelope_Pitstop, BSN, RN]

There are pediatric nursing homes and pediatric rehab facilities that will care for chronically ill children for long periods of time. Many of these facilities also provide respite care to families that care for their child at home. Respite means that the family can bring the child to the facility and drop them off for a short term period to take a break.

In addition, home care agencies can provide skilled nursing care to the pediatric patient in their home for up to 24 hours per day. With the advancement of ventilator and other medical technologies, and the increased accessibility of this equipment for the home setting, more and more chronically ill children are being cared for at home, by the parents with the assistance of home care nurses.

Thanks, Ashley. I wasn't aware respite care was available outside of a hospice setting.

What is the quality of life for these patients? Is improvement ever seen? Does anyone know if the head cooling does anything?

[TiffyRN, BSN, PhD]

The unit where I work does not do head cooling, but that's because the large children's hospital next door does do it and thankfully there isn't enough need to justify two large level III NICU's both doing it. The general feeling from the nurses who work with these children is that they will be severely disabled, but they do survive. I did a quick search and found an article that kind of says the same thing, less death, but less disability (I guess this is reassuring?).

WHO | Cooling for newborns with hypoxic ischaemic encephalopathy

[TiffyRN, BSN, PhD]

Here's another recent study, if you have access to NEJM you can read the whole article (I have access at work). It's about long-term outcomes and gives some stats on what percentage of children have intellectual disability.

http://www.nejm.org/doi/full/10.1056/NEJMoa1112066

[Penelope_Pitstop, BSN, RN]

Here's another recent study, if you have access to NEJM you can read the whole article (I have access at work). It's about long-term outcomes and gives some stats on what percentage of children have intellectual disability.

MMS: Error

Thanks so much, Tiffy! I appreciate your searching. Maybe I can find some personal accounts of these children to give me a better picture.

[umcRN, BSN, RN]

We do total body cooling and it can work well IF the patient was an appropriate candidate in the first place. There are guidelines for cooling yet there are many times where the emotional practice of trying to save an infant, the guidelines are put to the side. I have seen babies cool that still herniate - obviously those ones don't make it. In the mild cases of HIE (hypoxic ischemic encephalopathy) I believe there is a good outcome for the cooling but like many things in health care there is a spectrum and it is impossible to know which infant post cooling will do well. Even the ones who leave the NICU breathing and eating well on their own there is always a chance that that is the only thing they will ever do while others might be discharged with a trach and feeding tube and though years of therapy overcome those disabilities.

There is a long term care facility near my hospital and I'm sure as some of the children age they wind up there.

[karnicurnc, MSN, APRN, CNS]

We do total body cooling for HIE. Some of them live and some of them die, but for those that live, the outcome is quite poor.

[KelRN215, BSN, RN]

They live but they are permanently disabled. I did pediatric neurology/neurosurgery for close to 5 years- almost all of them have seizure disorders, many are trach'd, G-tube, non-verbal, blind/deaf, wheelchair bound, etc. They may live at home and get private-duty nursing, they may live at a residential school for children with special needs or they may live in a pediatric LTC environment.

[imintrouble, BSN, RN]

This is just about the saddest thing I've ever read on AN.

It makes me consider my blessings, and thank God for what I've been given.

I would be a broken human being if I had to care for sick babies.

Bless all of you that do.