Sunday, November 26, 2006


"They said he would never come off the ventilator."

When I heard that the mother had said that, I just had to shake my head a little bit. How is it that parents can be so mistaken about what we told them? Sure, we told them their baby would likely be on the ventilator for a long time, but never come off? I know we didn't say that.

The mother was talking to our NICU's nurse manager. She was the mother of the baby whose arm had broken (see my previous post) and in the course of a long chat with the manager was getting some things off her chest. She also was a little miffed and confused because of how we had explained the cause of the baby's yeast infection to her. I had told her about the baby's prematurity and poor defenses secondary to that. My partner had mentioned that antibiotics can contribute to it (which is commonly thought to be true but recent evidence suggests it might not be). The mother saw these as contradictory rather than complementary explanations.

I can see to some degree how mother could be confused by that, although I'm sure our explanations included more than those two elements, but I really don't understand where she got the idea about her baby never coming off the ventilator. Was that her own fears changing her words as she processed them? As she got farther and farther away from being told the baby would be on the ventilator for a long time, did her memory fade and change "a long time" to "never"?

It's actually a fairly common occurrence, parents saying we said something we never did. I don't think it's malicious or intentional on their part. It's probably just another thing we can attribute to the stress people have when their baby is in an NICU. (Although I think there are some parents who unconsciously, or sometimes consciously, embellish their baby's story, perhaps to make it more dramatic. The number of times I've heard a parent say of a school aged child "They said he would never walk or talk" far outnumbers, exponentially outnumbers, the number of times I have actually said it.)

We'll just keep plugging away. I try to tell myself it doesn't bother me anymore when parents claim I said something I didn't, because I understand it and can rationalize it - but I really don't like lying to myself.


Blogger Terrible Palsy said...

Ahh. The mind of a prem parent. Who knows what is going on. Or what mum and dad thought was said.

On the prem forums, there is always a lot of competition as to who had the earliest/smallest/sickest prem. It's the premmie-er than thou mentality. Personally, its a competition that we are quite happy not to win.

Funny thing is - parents think you say things that you don't. And parents hold you strictly to everything that you do say. You can't win!

9:43 PM  
Anonymous I am just the mother said...

Come on dont be too hard on the Mom. She is scared her baby will never come home. 8 weeks on a vent and a broken arm. Give her hope. That's all she wants. And if she is going to the nurse manager and saying that you said something that you didnt then she may not trust you anymore. Just be patient and honest. You know more than she does and its hard for a parent to believe that things are going to be alright when at the time they arent. She feels out of control and her precious baby is in your hands. Not hers. All her thoughts of how things would be when the baby was born have not been realized. Its hard.
Terrible palsy-- I love your comment on the premmier than thou. Very true.

11:34 PM  
Anonymous Anonymous said...

poor parents,poor docs and nurses.her's hoping an opening in the other nicu comes open soon,since these people are unhappy and seem to be staying that way.

3:45 AM  
Anonymous Stefan J said...

Dear Neonatal Doc,
I really enjoy reading your blog!

So, I added your blog to the internet link collection of 99nicu, started by me and other computer geeks at the Karolinska NICU in Stockholm.

I hope you don't mind ;)

Best wishes from Sweden,
Stefan J, consult neonatologist

5:22 AM  
Anonymous Dianne said...

Maybe someone at some time said there was a chance that the baby might never come off the vent? That sort of statement could scare the parents so badly that they missed the qualifiers.

I wonder if there isn't also a desire to feel that the baby is doing unusually well. After all, if the baby is doing better than expected, perhaps it is stronger than expected and likely to do better than expected later in life.

None of which means you have to like dealing with it, but if you can smile and congratulate the parents on their baby's doing so well, that's probably easier than trying to correct their misperceptions.

9:47 AM  
Blogger Laura said...

somedays we feel like we could talk until we are blue in the face and not a blessed sound is heard if we are to believe what parents tell us we said or swear we never told them. it helps us to vent sometimes and get this off our chests so we can return to the nicu again tomorrow (or in my case tonight) and face it all again. i just posted yesterday in my own blog about encounters like this that suck all the oxygen out of the room for those of us who care for these wee ones and their families.
i know your frustration all too well and, being on the other side of the bed as the preemie mom, i kind of get these families....kind of, sort of. okay, i confess not so much. i guess ultimately i am the kind of girl/mom/nurse who looks at th big picture and families like these, bless their hearts, don't.
i agree with terrible palsy (especially after 4 straight nights with 2 such families and 2 more nights with them before i get a break- woot!). sometimes you just can't win. in those cases i just freeze a warm smile on my face and pray for a quick discharge with no rehospitalizations.
hang in there. ultimately you know you, your partner and the fabulous nicu team who implements your orders did right by this baby whether mom doesn't express that truth or not.

11:13 AM  
Blogger NeoNurseChic said...

I had a parent the day after Thanksgiving who was angry that his baby was rooting around and trying to suck on his hands because he said the baby wouldn't be doing that if I hadn't given him a pacifier. *sigh* First off, mom was giving him pacifiers.... And no matter how many times I explained the rooting reflex and all the other things about normal baby behavior (not to mention the fact that he has a bunch of adopted and biological children), he still didn't get it. Just stood in the doorway to the hall and mumbled stuff about me nonstop. I was completely exasperated. This past Friday was one of the worst days I've ever had at work, and that was just a small part of it. None of the kids were sick - in fact, 2 of my 4 were going home. It was just overwhelming things dealing with various parent behaviors.

I really, truly enjoy working with families. I've always considered that to be one of my strong strengths - I can generally get along well with people that other staff can't get along with at all. But lately, there have been such a lot that have been saying things that aren't true, yelling at me, telling me I don't know how to do my job, etc - it is hard not to become cynical. I'm trying - because in the end...I don't want to become negative about it.

But like you - it's hard to lie to myself sometimes. Hard for me to say I don't mind it and I understand - of course it is upsetting to have a baby in the NICU, but that just doesn't excuse some things. Doesn't make it okay... Doesn't make it any less painful to us. And as Laura said - sucks the air right out of the room when we are trying so hard to care for these babies and their families.

Hang in there - I understand this feeling all too well lately. Sorry that it seems so many of us are on the brunt of some rather interesting words lately...

Take care!
Carrie :)

12:30 PM  
Anonymous natesmom said...

As a RN and mom who had a son in the NICU for 29 days...I am happy you were not my families nurses/docs. I do understand your point but perseption can change the words around but no doubt the words were probably said but when you as a parent see your baby hooked up to all those wires/machines and you as a parent have a hard time seeing the light at the end of the tunnel we grasp at every comment made. It is truely an overwhelming experience that nursing school didn't prepare me for. Sometimes knowing too much can also be devastating. Ofcourse I thought my baby was the sickest baby in the NICU. It took the NP who I had much respect for having gone to nursing school with her to come out and be honest with us and tell us...your baby is really not that sick and he will survive. We thought it wouldn't survive and were told by the peridoc that most likely his pulmonary hypertension was chronic and he would come home with O2 most likely trached and we would be lucky if he lived to age 2. Now I question...did I hear that correctly?? Maybe...maybe not because his pulmonary hypertention was not chronic and he never needed to come home with oxygen and he is thriving!!! Most of the nurses and staff were afraid to talk to see my sons report came back with T-21...and taking care of doctors and nurses are a real pain in the butt. How sad!

1:58 PM  
Blogger NoEmptyArmsHere said...

NeoDoc. Can you be sure that you are the THEY she was referring to?

Natesmom...HUGS to you! And congrats on your baby boy and hooray for him doing so well!

5:10 PM  
Blogger NeoNurseChic said...


I'm happy that your son has done very well. However, I'm pained by your comment that you wouldn't have wanted any of us taking care of your son and that taking care of nurses and doctors is so awful. For you to take one post said as a vent as the entire truth is pretty cruel. Every person has to vent. That doesn't mean that they are terrible people for not loving every aspect of what this job brings.

I for one, absolutely love working with families. But lately, I've had some hard times with certain groups. Doesn't mean that I go into my job any less empathetic or patiently than always - just means that I'm a little frustrated at being on the receiving end of some not very nice comments. Do I not have the right to feel hurt by things that some parents say or do? I'm not allowed to feel that way? So you're likewise never allowed to be upset or hurt by anything your patients and their families do? If that's the case, then you shouldn't have made the comment about nurses and docs being so hard to take care of.

I'm one nurse who has spent a lot of time as a patient in the hospital. And I'm glad I haven't yet run into any nurses who have had that assumption about me, because I'm not someone who is difficult to take care of. I'm very patient and have allowed numerous amounts of nursing students and med students even to be involved in my care.

You're right - it IS all about perspective, but maybe take some time to think about ours, too. Nobody here is saying that all parents are bad and that all things parents say are wrong. Nobody. These things are said in context and part of the reason people have a blog is to be able to vent when they cannot do so otherwise.

But until you know me and others you criticize so quickly personally, please don't judge. I don't judge you or your situation, so I would appreciate the same in return.

That being said - I AM truly glad to hear that Nate has done well and didn't need any of the things that the perinatologist had said to you. I hope you all have many wonderful years to come. :)

Take care,
Carrie :)

5:41 PM  
Anonymous Anonymous said...

dear natesmom,to illustrate what i deal with ON A DAILY BASIS,an infant's extended family member was upset the other day b/c another nurse had lost this particular infant's mittens.(white mittens,against white linen) this family memeber was extremely upset and verbally aggressive.i offered my unit mgr's telephone # and name on a business card to allow her to report this concern personally.she refused,saying"it's not the fact the mittens are gone,they only cost $2,it's not worth shooting you over" i had been cordial and tried to be helpful and here this idiot woman was making a not very veiled threat.yes,we deal with this fecal type behaviour on a daily basis.yes,we can express our frustration here if we wish.i'm surprised that you,an r.n. have not dealt with hostile and generally rude people more frequently.if you had,you would have more of a clue. and yes,it is wonderful that nate is doing so well.instead of griping,you should fall down on your knees and thank the father above for all you have received.have a little understanding of what we go through while you're at it.

6:13 PM  
Blogger Laura said...

part of me is compelled to fire back at you but at the same time i understand how you might have felt when your boy spent time in the nicu.
in the moment, whether it is 1 day, 29 days (like your boy) or 132 days (like my boy) in the nicu, it is ENDLESS and scary because it does hange on a day to day basis. i get that and even vrbalize that o the families i care for. imho, 1 dy in the nicu is 1 day too many for a baby if it is YOUR baby.
the point we professionals are making is somedays it is brutally hard to interact with families and support them. we are human. we have hearts and we do feel. i believe that is what makes us uniquely gifted to work in the area that we do. every medical professional outside of the nicu who has come into it when i am there tells me that they could NEVER do what i do. that's fine because i coul nver work with adults on med-surg.
like others i honestly can not believe that you have never, ever encountered patients and families that find fault in all that you do even when things are improving for them. i also am amazed that you, as a nurse, could not imagine another professional venting just a little after such enounters. but then again, i guess we all can't be perfect.
i'm glad that your son has recovered and is home in his mommy's arms where he belongs. in the moment, phtn is very scary and at it's most critical sometimes even the most experinced professional can not predict th eventual outcome. tht can be frustrating as hell to not have definitive answers but that is the nature of the nicu sometimes.
from one preemie mom to another, and one nurse to another, peace!

7:00 PM  
Blogger Bee said...

Possibly that mom was just being dramatic. But it could also have been simple exhaustion, stress, or "overload." My daughter has spina bifida. She was in the NICU for 10 days after her birth, and then at two month of age was admitted for 3 weeks to have a posterior fossa decompression and shunt revision. I am fairly intelligent and I have a master's degree, and yet some days in the hospital I was so worried, tired, and sleep deprived that I could not process what was being said to me, or keep track of the doctors and other specialists who kept popping up to tell me about a test result. You have a kind attitude toward your patient and parents, that comes through so well -- just wanted to post a gentle reminder that the parents are under the worst stress of their lives when their darling is in the NICU, and it definitely affects their ability to process information. Thanks for all you do for parents like me!

10:28 PM  
Anonymous Anonymous said...

You see this in infertility a lot.

"they said we'd NEVER have kids". When, in fact, they were simply told the odds weren't great and IVF was a better/quicker/surer bet.

I think it suits their sense of the dramatic, in addition to a terrible grasp of statistics.

4:37 AM  
Blogger neonataldoc said...

For starters, that "premier than thou" comment is one of the best.

I know I shouldn't be too hard on the mom. I know it's tough to have a baby in the NICU. In real life I do treat most moms pretty well, I think, but in my blog I get to ventilate some.

Nate's mom, best wishes. In spite of everything we write here, most doctor/family and nurse/family relationships are pretty good.

Stefan j, thanks for the link. I took a look at 99nicu. It looks great!

7:20 PM  
Anonymous natesmom said...

I am sorry I didn't mean my post to be a personal attack and yes I did go too far. I do apologize to those I attacked directly and indirectly. I do see your point as I have been in the trenches myself and it is great there is a safe place to vent and bounce off things.

The myth has always been that nurses and doctors don't make great patient. I know from my experience I tended to take care of this group or population where some of my colleges shyed away from them.

A little knowlege can be twisted. Also when you are the patient or patients family and are in the medical field often it is assumed you already know it all...Yes, I am generalizing but it is from my experince.

I agree that sleep deprivation can greatly influence how comments are heard. I do think the incidence of clothing lost was out of control by the family but I am sure this is the family reaching out and exerting control because they do not have control. I think replying to the family I hear you telling me in an indirect way you do not have control...I don't feel the issue here is the lost mitten. How can we give you more control or feeling of control? How can we make it right for you. Unfortunately PR is a big part of your postition in the NICU and often harder than taking care of the neonate. Does this make sense. Remember you all are the experts and as a parent I was so so thankful that my baby was in such expert hands.

I am sure you are all not thanked enough. Thank you!!!

12:44 PM  
Blogger neonataldoc said...

Nates mom: No apology needed, as far as I'm concerned. I'm willing to listen to just about all viewpoints. And you're right, doctors and nurses probably make the worst patients.

7:42 PM  
Blogger purple_kangaroo said...

It must be frustrating for you when parents misunderstand or misinterpret something you said.

3:52 AM  
Blogger apgaRN said...

A friend whose infant was critically ill once mentioned to me that it's difficult to absorb information when you've received any bad news or diagnosis. She said that her brain stopped listening past a certain point in the conversation. That always stuck with me, and I try to be understanding when I'm caring for a patient who has completely misinterpreted the medical information she's been told. It is a LOT to take in, no matter what we're saying.
Interesting discussion here... I appreciate your willingness both to vent and be diplomatic, NeoDoc. And yes, we do make the worst patients, don't we?

10:49 AM  
Anonymous celeste said...

I think that when a newborn is in the NICU that Drs. and Nurses really don't have an understanding of what mom is going through. I do realize that your real concern isn't for mom but for the baby. As it should be.

How often do you ever consider the fact that just one day ago (or close to that) they were just one person. That child was still inside his mother and they were sharing one body. Mothers of newborns have a real need to be close to their babies. I have seen first hand how they are treated in an NICU. Nurses in the NICU many times do try to be in competition with the mom's, it seems. They do this in the name of medicine regardless of it that is really what it is or not.

By that, I have seen them not offer to let mom feed her own baby but begin the process themselves, or changing diapers it's the same thing. These are all things ,that in most cases mom's should be permitted to do, and yet, the NICU nurses take charge without even one thought of how mom feels.

Medical people are just that. They provide needed medical care to sick or premature peole. You should not be trying to one up the parents by demanding to be their childs only care giver just because they happen to be in your NICU.

Neonursechic, I also would not EVER want you taking care of my child.

2:40 AM  

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