Any 22 weekers out there?

umcRN, BSN, RN · Jun 11, 2011

Tralala&TiffanyMarie - These are the issues we deal with every day, which baby is going to go in which direction and how can we predict that to give them the best quality of life, whether here on earth or in heaven. A coworker and I were actually discussing this today and she was talking care of a 24wkr, only a few days old who has suffered massive gr4 brain bleeds. Its interesting because as soon as they saw that head ultrasound the particular doc that was on offered the parents withdrawal if they chose, while I know had it been a week earlier the doc on that week would not have offered that to the parents.

There are sooooo many variables involved, the family, doc, status of the baby and our inability to predict. I will say at least at my hospital if a baby has issues that severe and parents want to discuss withdrawal most of our doctors will visit the subject and go with the parents wishes. It is an issues on our unit where actually our docs quite often bring up the subject of withdrawal and the parents refuse no matter how many times people try to help them envision a life with a total care child...not so bad as infants but when that infant stays basically infantile into adulthood it gets different and parents don't always see that side of things until its years too late.

There is a pediatric rehab facility near my hospital, we have quite a few babies from our unit that go there and often we see them again when floating to the PICU, because of this rehab unit our PICU gets full of these types of patients, the chronic trach/vent/gtube/MRCP children, while some have a great life with parents who love on them and families who accept them, sadly others do not have that great life and suffer for a long time. It's sad and I honestly can't say what I would do in the setting of having a premature baby myself, on the other side of that babies can be born full term with just as many problems and issues. I think it really needs to be a personal family decision what to do with care, especially if a family wants to withdraw, but I also do feel that maybe too many babies are kept alive when it's not in their best interests because the parents don't want to withdraw. We have a baby on our unit now, shes 11 months old, ex 28wkr - not to young, 890grams - not too small, but she is our most chronic, disabled baby on the unit with a disastrous MRI and parents who wanted everything for her but are now scared to even try suctioning her trach or participate in cares and shes been trached for months. She will likely end up in and out of the rehab facility and the PICU for the rest of her life, whatever it may be. Breaks my heart.

Sorry for the long post/ventish, guess it was just close to home today

nicu4me · Jun 11, 2011

We have a doc that likes to do sadistic things in name of research (the staff thinks). Who puts a 23 wkr on nitric? Who takes kids that are apgars of 0/0/0 really what came after the last 0? I am serious. Also, dead guts, these kids sometimes live but have horrible outcomes. Yeah but we had one kid make it remember? To what extent. I tell ya our job comes with a lot of moral distress. People do not understand that we DO NOT take care of regular babies that are just born small. They r half cooked. Parents saying they don't have 10.00 to stay in our hospital hotel? Really? As I hear you smokin on the phone. No car to visit? Really? And how are you going to care for a chronic kid? If the kid gets to go home on O2, and needs homecare they have the O2 delivered somewhere else than where they actually reside in order to keep their drugs in the house. They work the system so bad. No car seat? (Im not talkin dreamride) Really? And my last rant, "I can't take the baby home today, I have to work the weekend and I don't have the room ready" ITS BEEN 3 MONTHS! Oh, I must be gettin burned out. Just talking about 23 weekers makes me ill at times. They are fetal to the extreme and NOT ONE OF OUR DOCS ever suggests taking off. 420 grams, sure we will take ya. HFOV for months, NEC, PDA, etc. And I think about 90% of our population is medicaide. I don't discriminate but just making the payment on my hospital bills or my copay for insurance visit, I think twice about going. Something has to change in my state. Sorry for the hijack.

littleneoRN · Jun 15, 2011

We have a doc that likes to do sadistic things in name of research (the staff thinks). Who puts a 23 wkr on nitric? Who takes kids that are apgars of 0/0/0 really what came after the last 0? I am serious.

We often put micro-preemies on NO. There is a lot of research out there these days looking at the benefits of use of NO with micros. I don't know that I can put this in the category of sadistic. Half of our 23 weekers go home, and many of them...in the long term...have mild or minimal health problems. How can I not offer one that chance and see what happens? I too get frustrated watching some of the difficult situations that unfold in our work. Sometimes I have to look deep into my heart to decide if I can be part of something that feels very wrong to me. I've stood up and said no to things before. However, I see enough Christmas cards from families of kids who shouldn't have had a fighting chance...23 weekers who are graduating from college, sick DHs, awful birth asphyxias...to know that the real outcomes aren't truly in our hands...and aren't predicatalbe. I've watched lots of kids come in the terrible Apgars after birth asphyxias who get cooled, have a clean MRI, and go home in apparent good health. I'm the first one to admit that we don't know what life looks down the road for these kiddos. But life is full of uncertainty, and sometimes kids surprise you. The discouraging thing is that sometimes they don't, and then we feel party to something that feels wrong.

So to those of you who are parents of babies who've spent time in the NICU...or to those of you who have spent time in the NICU yourselves...the greatest desire of my heart is to see a healthy baby go home with his family. We are so happy for those of you who have had positive outcomes despite great adversity. Know that when nurses talk about struggling with these questions, they are not dismissing the success stories...and it's not that they don't care enough to give a baby a chance. Generally speaking, it's that they care so much that they have difficulty offering care in good conscience that may not be in the best interest of the baby. We have watched many babies live with prolonged suffering that does not end well, and this can be extraordinarily distressing. We invest our lives in the care of sick infants, yet we typically have a very limited role in decision making. Decisions must be made with a great degree of uncertainty about the actual outcome. And it is all of these factors that make this a very difficult topic for many people.

Elvish, BSN, DNP, RN, NP · Jun 15, 2011

Well-said, littleneo....very well-said.

tralalaRN · Jun 17, 2011

Very interesting thread.

Before one gets a chance to become a neonatologist, they really should be required to spend 2 solid weeks in the home of a family whose child is severely impaired by complications of prematurity, providing ALL of the cares. (In a perfect world!)

Several years ago, a number of parents concerned about their children's development got together on a blog - eventually discussing neonatal ethics. It was a no-holds-barred discussion. .gut wrenching. .the site was hijacked by a couple of neonatologists who shamed many of the parents into submission. How could we be so awful to say that it might not have been a good thing to save our child? How dare we! Well, living day in and day out, year in and year out with a child who never can hold a toy in their hand, or who is so severely emotionally disordered that they are a danger to the other children in the family (one mom had a former preemie daughter that tried to stab the new baby). .one mom's child so severely autistic, that they had to bolt down the doors to keep him contained. These were the realities being discussed, and those neonatologists did NOT want to hear this.

Sadly, prematurity remains the number one cause of disability, and not many people out there are aware of it.

Thank you for your courage in sharing your thoughts!

dawngloves, BSN, RN · Jun 23, 2011

Half of our 23 weekers go home, and many of them...in the long term...have mild or minimal health problems. .

I'm sorry, as much as I agree with some of what you said. I have to call BS on this. a 23 weeker has a 70% mortality rate and of those surviving, 46% will have severe to moderate disabilities. Your hospital is defying the odds across the board by a large percentage? :confused:

tralalaRN · Jun 23, 2011

I agree with you so completely, Dawngloves.

THE problem, is, is that NICU preemie graduates are generally only followed developmentally to age 3. Up to that point, only the more severely disabled children are found - those with more severe cerebral palsy, mental retardation, seizures, etc. They should be following these kids to age 10, when other issues could be ruled out such as various types of autisms, severe learning disabilities, emotional and psych disorders.

One of the biggest and longest studies done on former preemies was the EPIC study done in Britian. The British are NOT as aggressive as the U.S. in saving extremely preterm babies and especially those with big brain bleeds. So one would expect that their outcomes would be better. They found that the longer they followed former preemies - the more disabled they became, showing that as more developmental milestones are expected - socialization, learning, reading, coordination, executive functioning skills, the poorer and poorer these children perform. Most 23 weekers will never live independently as adults.

tralalaRN · Jun 23, 2011

Should have been "EPICure" study, not "Epic" - my apologies.

littleneoRN · Jun 23, 2011

I agree that longer term follow up should be done. However, our hospital keeps careful statistics for VON, and the last time our statistics were published in a report, our survival to discharge for 23 weeks was 50 %. No BS. According to VON, we have a high actual to expected survival ratio based on acuity. One of the highest. I'm not defending this ethically as I wonder about the "success" of some of these discharges. I realize the futures are extremely mixed, but I swear I am not lying about our unit getting college graduation invitations from 23 weekers. You stated that 46% have moderate to severe disabilities. That means many...54%...have mild or none. I sometimes disagree with the definition of mild as some in that category are very life altering for a child and there family. However, I stand by my statistics.

tralalaRN · Jun 23, 2011

There are many children with mod to severe disabilities who attend college but who will never live independently - just saying, because this seems to be the belief that if they grad college they are fine. Several years ago, I assisted a young woman who was a former preemie - 32 weeker with severe cerebral palsy, in a wheelchair, unable to care for herself but who went to college. I'm sure she had the intelligence to graduate, but then what? She could not drive, use her hands, walk, go to the bathroom. .she was still living with her mother who was just about at the end of her rope with all the cares needed. Many kids with learning and emotional disabilities also attend and graduate college, but career placement is again, more dicey.

Just wanted to add that, because a child going to and graduating college doesn't mean they will be living independently.

littleneoRN · Jun 23, 2011

Totally agreed Tralala. I was specifically thinking of some young people who are healthy and well, but for all of them there are many more who are not. I'm not against your position as you've stated it. I just see the complexities on all sides of the issue. I have no clear answers.

NicuGal, MSN, RN · Jun 24, 2011

We follow our kids until age 3 but then they are turned over to our comprehensive care after that.....when we float up to that floor we see these kids....and I have to say, more than 50% of our 23 weekers have life altering deficits. It is sad to see them when they are 4 and 5 years old and are like the baby I took care of

And 22 years ago, when these 23 weekers would be graduation age now, we didn't save 23 weekers...24 weeks was the cut off with a 500gram weight limit. So I am thinking that these kids are not true 23 weekers. I've been in this field for 25 years and I have yet to see a 23 weekers graduate from college. I have seen 24 and 25 weekers graduate from high school, we have the pictures on our wall :)

I don't think there is a clear answer, but all I know is when I have a 23 weeker that is maxed out on vent settings, on max vasopressors, their skin falling off and they are bloated beyond recognition, not to mention the bad brain bleed, I really question what we are doing