Warning: I need to vent!

Specialties NICU

Published

Today I cared for a 23 weeker. In report this morning, I was told that the infant has a stage IV IVH, which the parents are unaware of (the child is 9 days old, the MD has known about the IVH since DOL #2, according to the MD's dictation in the chart). During rounds this morning I asked if the parents knew about the IVH and (when told that they did not) asked when they would be informed (and by whom: the MD, NNP, or me). I was told by the NNP and another nurse that the parents wouldn't be told about it because there was no treatment that would be performed.

I was stunned, and at a total loss for words. :angryfire As a new grad, am I just being naive? I just assumed that it was the right of every single parent to know exactly what was going on with their child...If I were in the parents' shoes, I would like to know about the IVH...

I broached the subject with my preceptor (I'm about half-way through my orientation period), and was told that it was up to the MD; since the MD didn't feel it needed to be mentioned to the parents, the nurse should not mention it to the parents.

When the parents visited this evening, I did not mention the bleed. I feel horrible about it...I guess to me it's kind of like "lying by omission". Am I being too hard on myself? Am I being to hard on the MD?

Thanks for listening guys....you're all fabulous!

M

Specializes in NICU, PICU, educator.

Okay, I have to say this...your NM sounds like a horse's behind :angryfire ...an NICU has to follow a standard of care, and this includes having unit specific protocols and procedures. How the heck do they pass Joint Commission inspection? We have to whip out the ole manual if they ask us a question! I would get out of there pronto and if the NM at the next hospital asks why you left, I would tell her what you have said here.

Sometimes, after I hear stuff like this, it makes me want to kiss the floor at work...well, maybe not that far, but you know what I mean :chuckle

I agree with BittyBabyGrower..how did they pass JCAHO? It sounds totally unethical, and I would DEFINATELY want to know if it was my kid. And the not having an interpreter thing is terrible....if you need a translator, then call the line! They may not be there to assess the kid, but that doesn't matter! usually interpretors are not nurses anyway. Also, the role of the interpretor is to translate ONLY what you say! THey are not supposed to add to or subtract from your words or to interject their own opinions at any time!

And them not having an interpreter thing is terrible....if you need a translator, then call the line!

Some hospitals don't want to use that phone interpretor because it costs them $2/minute. At least that is what I heard about our hospital.

Specializes in NICU, Infection Control.

If everybody used it everytime they needed to communicate w/a parent, administration might just realize it would be cheaper to have translaters. Just a thought.

The parents absolutely need to know. With a grade IV, the baby could need a shunt....the parent would have to consent to this and would have to know all about IVH before consenting. I have even seen our doctors when the babies have bad bleeds and are maxed out on epi and pressors discuss with the parents about DNR's and taking them off the vent when there is absolutely nothing more that they can do for the baby. What state do you work in? I wonder if your docs just have a very different philosophy. I can't imagine a neo not telling a parent that their baby has a grade IV....I can't even imagine them not telling the parents about a grade I! I think it's very sad to keep important info from the parents. You have every right to be mad and I would talk to your ethics team if you have one.

If everybody used it everytime they needed to communicate w/a parent, administration might just realize it would be cheaper to have translaters. Just a thought.

Amen, sister!!

ANd maybe if hospitals PAID those of us who can translate, then we would be more willing to translate outside of our department. Also just a thought. :)

Hi all,

I read this thread this morning, and wasn't sure if I should reply or not, as I'm not a nurse, and I tend to lurk around here out of interest...I am the mum of a 24+5 who is now almost 5.

So I hope I don't upset anyone by replying. My son had a grade II bi-lateral IVH, which we were told about at @ 2 weeks of age, it was then never mentioned again, at the time despite asking we were never told what the chances were of long term disability.

We have spent the last 5 years discovering just what goes with his bleeds, ASD & Learning Disability.

We have been devastated by information, we have stumbled across that has not been given to us over the last 5 years, for example discovering grade 3 stage 3 ROP at 10 weeks, that everyone knew about except us, we found out about a heart murmur the same way. So these things don't always stay secret.

I just wanted to add from a parents point of view these parents need to know.

If anyone is interested in reading more about our time through NICU & beyond Michael has a website: http://www.michaelrigaud.co.uk/

Am going back to lurking now, hoping I haven't offended anyone.

with all best wishes

Debby:imbar

I would think at the very least this little one would be followed by more head u/s, and at some point have a base line developmental screen done. The parents MUST be told, after all they are the ones who will be caring for the baby once home.

Not all grade 4's requirer a shunt...but they will need close follow-up.

I know this thread is somewhat old, but I'm guessing this former 23-weeker is still in the NICU, so here goes...I agree that the parents need to be informed, but here are some thoughts on why they may not have told them ASAP. As someone already said, the treatment plan for Grade 4 IVH will just be to wait and watch. The head ultrasound will be repeated numerous times and will hopefully start to resolve without resulting in PVL (peri-ventricular leukomalacia) which is REALLY bad. But this doesn't always occur, and doesn't always require a shunt be put in. We were running a special on Grade 3-4s about a year ago and none resulted in a baby needing a shunt. I must say that as far as developmental delays and eventual learning disabilities, those can occur without ever having a bad bleed. Temporary anoxia from bad desats aren't helping those brain cells any. We did have one baby with a really bad grade 4 that everyone said was the worst they'd ever seen. Those parents were encouraged to withdraw support, but they refused and he eventually did not live. It's definitely a matter of practice styles with the different Neos too. The only other thing I can say is that ignorance is bliss...it's hard enough to deal with a pregnancy resulting in a 23-weeker in the NICU on a vent and all the other fun things we do to them, but to explain to them the possible "life-sentence" of a grade 4 bleed...maybe it's better to wait on that one. Plus, we can NEVER predict the outcome of a bilat grade 4...one of our neos has a former 26-week nephew, now in his twenties, who does not have CP, did not have a shunt, no PVL, went to college and all that good stuff...so there is always hope. :)

Just thought I would update ya'll...

This sweet, beautiful baby passed away two weeks ago...I was out sick at the time and was unable to attend the funeral. The parents were finally informed of their child's condition and decided to withdraw life support that evening.

As sad as I was to hear of her passing, I do believe that she is in a better place now, free of pain...I think of her often...she is the first baby that I have helped care for that has passed away and I can't seem to get her out of my head...but, I don't mind it much because thinking her makes me smile...she was so sweet and such a fighter.

I have spoken with my nurse manager about what I believe to be a communication break-down within our unit...but have not heard anything back from her about my thoughts/suggestions.

I am so glad to have a forum such as this to discuss all that goes on at work! Thank you all for your advice, encouragement, and wisdom!

M

Specializes in Nephrology, Cardiology, ER, ICU.

Thanks for the update and it sounds like you are doing okay with it too. Remember to take care of yourself.

So sorry to hear the news...I think the first baby you take care of that doesn't make it always has a special place in your heart. I know mine does. Take care and thanks for keeping us posted.

+ Add a Comment