NICU staff being judgemental.

[NicuProblem]

I'm in tears. Requested my baby's medical notes after a prem birth. Found a part where apparently they started a visiting log as they felt we didn't stay on the ward long enough, that I wasn't talkative enough and that my husband "rarely visited".

I don't drive and have an older child with disabilities. My husband works and at that time was working night shifts. They KNEW this.

I feel distraught by this notion that at my most vulnerable when I was trying my best I was judged as somehow not good enough.

I agreed with you in your earlier posts. Not so much your later ones. You sound angry which honestly I understand but it does seem like you are hitting out at anything now which I do get. I had an horrendous birth, almost lost my baby, someone was sacked because of my birth care.

My biggest advice if you are going for a negligence case as you seem to be is to stop looking at every little detail and kicking off at it all and concentrate on the important things.
What did they do or didn't they do that they should have which caused harm to you and your baby at birth.
Hitting out at everything else will just diminish from the real issue.

No one is going to discipline staff for being concerned a parent was there 'almost daily' that the Father is only coming once a week because he's a waiter when a baby has been so poorly it nearly died and a Mum who is talking to consultants because she doesn't want anyone to check she can do things for baby because she already knows it all and can do it all herself so her husband doesn't need to be there.

That's not to say what you did is wrong but you have to say well this worked best for us and ignore it. They aren't going to strike it from your records or sack staff.

The reason that they sit with NICU babies parents and make sure they can do things is often babies go home with feeding tubes, oxygen, equipment or whatever and they need to make sure you can use it. Going to a consultant and demanding they don't do that because you don't think they should is silly.

Even my non NICU baby they still did the first bath with me and my first feed, I didn't kick up a fuss because I knew how to do it, I just listened and nodded.

It's not staffing that makes them want you to be with your baby. Your husband could have come, none of what you put about his shifts is a reason for not doing but you decided it best between you not to and that's absolutely fine as long as you don't get upset that people will question it.
You say this works best for us.

They want to see that he can also feed baby, tube change, do the daily care in case for some reason you can't do it or just provide support to you so you are not doing it all alone.
Saying well I'm doing it all so why would he need to, if I'm not there baby is just asleep in a box so why does it mafter would all ring alarms. Looking after a prem baby is hard work, you might be doing it all but if you develop post birth complications he needs to do it.

If he wasn't visiting be could have registered the birth for you so you didn't have to drag yourself out there days postpartum.

Like I said I'm honestly not having a go but seriously in your case concentrate on actual facts that harmed you and your baby.

She didn't come home on tubes. She came home as a normal baby, just very small.

What if I was a single patent? What would they do then, just not release the baby because I had no partner? What if my husband worked overseas? There are loads of scenarios where people's partners aren't doing exactly 50/50 all of the time.

I understand why they'd need to train you to use equipment.

The consultants agreed with me! One said I'm a sensible experienced mum and there's no reason I have to stay overnight if I don't feel it would be beneficial. I still got comments from nurses.

Perhaps I am overanalysing every detail and focusing on relatively minor issues but I just find it upsetting that anything outside of the norm is put under scrutiny. All families are different and something being unusual doesn't mean it's harmful.

I've been in hospital as a single parent of a sick child.
I was questioned as to if I had any support when my child came home. Whether I had family to help out.
A military friend was asked the same.

I'm guessing if we had said we had no support network it would have been flagged to health visitors or such.

Great post , with very sensible balanced advice Troublesomeclucks.

Ultimately the NHS has a duty to care for both baby and mum. Far far better that they keep an eye when unnecessary than ignore , later finding child is neglected and mum has severe pnd or worse still, both end up dead. You can imagine the quite correct horror that events that lead to such a terrible outcome we're not monitored. These awful outcomes DO happen. I would far rather a lot of pointless monitoring if it saves even one life .

You are not seeing the point - they did see it as ok in your case but these things have to be done to pick up the ones that arent

It just feels like you walk through the doors and everyone's staring at you waiting for you to do something wrong.

Honestly NICU my friend is an NICU nurse. The only thing she gives a damn about is that the baby is recieving the very best care and is going home to a parent or parents who are prepared for its care.
She has had three of her own in NICU and many of her collegues chose NICU because of their own experiences.

They have obviously had concerns but they haven't passed the boundary were that concern warranted a referral.

The reason I probably seemed quiet was I felt like I was being assessed while I was there. So I wasn't comfortable being myself because I felt like I was being graded, like an exam or a practical study. I felt I was caring for her in a goldfish bowl.

I'm quite quiet anyway but it definitely made me feel very uncomfortable. I did try to chat to the nurses and build a relationship even though I'm not naturally talkative because I wanted a good relationship with the staff.

Oh and someone asked can he change a nappy now and yes he can. He feeds her changes her the only thing he won't do on his own is bath her because he's worried as she's small and slippery. So I do that.

They have obviously had concerns but they haven't passed the boundary were that concern warranted a referral

this point has been made by many .

I'd be interested to know from the OP if she read remarks in her notes that indicated that despite previous .observations there were no longer any concerns about discharge of the baby or involvement /interaction by the parents .Presumably reasons would have to be cited as to why .

peridito no. There aren't any notes that say that. There's a part where it says mum says she has lots of family support but thats it.

She came home as a normal baby, just very small mine came home as a normal baby too, just in tube feed.

What if I was a single patent? What would they do then but you aren't and they know that

The consultants agreed with me!! ime the consultants are more interested in the medical than the social. Nurses spend the time with parents more than consultants do. They see more of the red flag issues and more aware of what help is available. If you'd said I'm not coping, I don't know what to do when we get home it's the nurses who would pick it up, not the consultant.

No one is judging you for being quiet. I got told off for over stimulating him but reading to him too much and I'm fairly sure any notes on us in those first weeks suggest we were in denial about his liklihood of dying and erratic emotionally. It's a snapshot of what is happening not a graded paper in how you'll be for the next 60 years of parenting.

OP someone said uptbread about you suing for negligence, is that your actual issue? That you feel your baby coming early or how they dealt with it was their fault?

All families are different and something being unusual doesn't mean it's harmful.

That’s absolutely correct. I don’t think anyone would dispute that. Was it actually written that your unusual situation was harmful though or was it just a daily mandatory checklist containing factual observations?

I would think if it’s written that the situation was considered harmful there would have been some sort of intervention but this does not appear to be the case? Otherwise they would be open to liability.

The specifics of your babies medical situation in NICU are really neither here nor there in regards to policies and procedures. You seem to be expecting the rules to be made up and changed for each and every baby and family depending on the unique situation. That’s just not how hospitals work. They can’t, it’s not feasible so most stuff is a one net to capture all approach even if your specifics mean you don’t really require a net. Nothings personal, it’s one system and approach for all with not much room for personalisation or common sense. I am well versed with this having worked in public hospitals, both NHS and in my own country for 25 years.

Yes, NICU is a fishbowl environment but it doesn’t mean people are automatically judged every time they walk in, some people obviously feel like that due to the nature of the environment, whether it’s perception vs reality is another thing though.

During my time in NICU with my child I saw several babies taken into care or shared care due to concerns. Every one of these situations was valid and none were anything like the personal situation you describe (obviously, as they had no concerns leading to intervention). However 100% of people had all the mandatory observations taken and facts written down. It’s a system.

I ask you again what do you want from this.

You handled a difficult situation in a way you thought best

The nurses did their job correctly and well

No one did anything wrong

Thing is OP your situation isn't that different to lots of people's. You had a prem baby in hospital, a husband working to keep a roof over your head. Would I have organised things how you did? Probably not but that doesn't make you wrong, it makes us handle things differently. Hospital raised a concern, as is their job, and found it unfounded long term so took no further action.

sleep sorry my choice of words there was really rude. She had a tube for ages and my eldest is disabled so I would never want to make anyone with additional needs feel abnormal. I meant she came home with no extra medical equipment as a baby who hadn't been unwell would. Again I'm really sorry if I offended you by saying normal, I didn't think

See I got on more with the consultants than the nurses because I'm comfortable with data, statistics and figures more than I am with people. I work with numbers and regularly asked about odds, oxygen numbers, sats, how low desats go and general medical issues that may arise to the extent three consultants thought I was a medical student. I think it showed that I'm not really a people person so much as a backroom person and maybe that's what the nurses picked up on.

I never read to her to be fair. I would've felt silly. I just used to cuddle her and talk to her softly telling her about what we would do at home.

Yes we are suing. I don't want to go into details because it would be incredibly outing but while the premature birth was inevitable, failure to act led to her being born in a worse condition than necessary and needing more interventions and on several occasions being very close to death. The whole journey could have been less traumatic. These comments now feel like sticking the knife in.

What I want is for context to be added. I have no problem with them saying "dad visits weekly as he works long hours, doesn't drive and has an older son with special needs."

"Dad rarely visits" explains none of that and rarely is really subjective.

NicuProblem no problem, I had someone stop me to ask if they could pray for my 3.5 yo yesterday as she was really worried about him!! He's a perfectly average looking albeit exceptionally adorable child, he just happens to have o2 tunes my my hackles are over sensitive today.

I really think you need to find a way to. Move on from a handful of comments in 10 weeks of care. If thry had a problem with your parenting, you would know it.

Remember that whatever errors may or may not have been made at her birth, they weren't made by the nurses on NICU. The two issues are totally Seperate. They would only care about what happened there and then. You need to focus on the medical negligence, not how unrelated nurses worried about if you were coping.

Hopping It wasn't written it was harmful but it says they started recording visits as dad rarely visits and mum only stays for a few hours.

So that to me implies they think something is wrong.

I think it's the one size fits all approach I find upsetting yes.

It is a very very shit, very very judgemental system that no one in the world really signed up for. You're judged so much more harshly, and in much more difficult circumstances, than you would be if you were the parent of a baby who'd been a straightforward delivery and off home the next day... and it's horrible, and often made much much worse by staff who've had an empathy bypass over the years they've been doing the job.

DD1 was in NICU because of prematurity and my own maternity notes are a litany of my "crimes" as a parent (they kept me in for transitional "care" which basically involved being bollocked for everything you ever did, shouted over how you'd logged feeds down, and threatened constantly that if you dared question anything they'd ring social services on you - oh and left hungry because ward mealtimes clashed with the feeding schedule they'd put the baby on and you were expected to stick rigidly to). It's like a list of infractions - me not being on the ward when they wanted me - because I was down in bloody NICU... me asking for staff to check with NICU how the baby was when I was unable to get up until the spinal block wore off was "excessive concern" apparently... I was "increasingly subdued and withdrawn" - when I was bloody knackered, pumping round the clock, denied food because of the damn feed times and being expected to appear in NICU to do all of those, and plonked in the corner of a post-natal ward from hell for weeks (where no one gets any peace anyway).

No matter how much it's needed to monitor these things for safeguarding - the manner in which they are currently done and how they are phrased is so judgemental and unnecessarily confrontational that it really does start you off as a parent on a terribly uncertain footing. I had crippling post-natal anxiety after DD1's birth - and I attribute a lot of that to how utterly unethically they used social services constantly as a threat to ensure maternal compliance with absolutely everything, how they yelled at us (I was yelled at because DD1 was fed 10 minutes late... she was fed 10 minutes late because I had to do all her NG tube feeds myself, and I'd drawn up a sample of stomach contents to check the pH level to make sure the tube was still correctly sited... and the pH level hadn't been the colours on the tube I'd been told to make sure it was - so I'd asked for staff help and guidance about how to proceed - got yelled at that I needed to learn to do with this or social services would need to be notified that I wasn't adequately taking care of my baby... and then 10 minutes later someone finally came to check the tube was OK before I did the feed... and when I logged this I got yelled at by someone else for the feed being late - I literally couldn't win. Fuck I'm crying now at the memory of this and this is 7 years down the line.) One staff member was so awful that the real angel on the ward would check the rotas for me, and pre-warn me when this one was due to be on so I could make sure DH was around and I wasn't left alone to deal with her.

It was the most dreadful experience of my life. How I was treated during those weeks was so awful (and I'll fully accept I just got a shite turn of luck in terms of how staffing levels had fallen, picked a bad hospital and a holiday period to give birth in, and was fragile emotionally anyway) that it has taken me years to get back to anywhere near my pre-baby level of confidence. For years I was terrified of social services and the child protection system as a result of how they would use it to threaten (there's no other word for it) mothers into compliance with everything unquestioningly.

Incidentally my community midwife read my maternity notes and on a fellow-professional level was utterly utterly horrified about what was written in them and told me to make sure I photocopied them before she took them away for storage when I was discharged from midwife care. I think she went absolutely ballistic on them as well... as did the health visitor when she heard what had gone on - it was reactions like those that made me realise how utterly fucking wrong it was how I was treated.

Most of my pregnancy with DD2 was spent in utter terror of her possibly being premature and having to go to NICU and the other hospital we'd gone to being full and us being sent back to the hellhole one. She was slightly premature but came up to the ward with me and they'd at least marked my notes to try to prioritise me NOT being bounced to the hospital everything had gone on at (I had written it all over in big red letters as well).

Incidentally DD1 now is a stroppy, long legged (legs absolutely bloody everywhere - I swear she's half giraffe), beautiful and funny almost-7 year old who of course knows it all about absolutely everything and is utterly unscathed by the entire experience... but thinks its absolutely hilarious that as a baby she was so nosy she came out early and had to have her milk in a tube down her nose.

But the nurses may not be across your personal circs and even when the circs is one parent working and child at home, most parents do visit more than once a week. I'm sorry but they do. He didn't, he loves her, he's engaged, so it doesn't matter. But it would be something that would raise a concern. If he's working 12 hour days 6 days a week then it also flags a concern that you'll have next to no real support from him at home. They have noted that you have familial support, probably to clarify why no forwarding action is being taken but of course they generally write down the concerns not all the "usual" cares etc.

It sounds like your traumatic birth has totally skewed your perception of NICU, and the two things aren't linked. No one is sneering based on what you said they wrote. No one thinks you're crap based on lack of forwarding action. They don't get parents to do cares because they want to doess work but because it's your child and you should be doing them once it's safe to do so if you're available.

HexagonalBattenburg that was undoubtedly fucking awful and ott, but there's nothing in Op's post to suggest it was any where that level and its the polar opposite of my experience. It doesn't in ANY WAY minimise what you went through, I just mean it's unfair to assume that that is normal or standard. It isn't.
Glad to hear she's doing so well

They've done nothing wrong with the notes. Notes are an impersonal recording of the facts. They were doing their job

Your not really listening to anyone. They weren't judging you.

There is a much higher chance a parent isn't going to bond with their baby if it's in NICU. The baby is their patient and they have to make sure that it is going to be cared for. They will monitor all parents, as they should. Most will be fine but there will be some that will need extra support and it's better they pick up on those than not. Can you honestly not see that?

A dad that visits once a week, a mum that is quiet and doesn't interact much is a concern. I'm sorry but it is. That doesn't mean it's wrong but it means it's something to keep an eye on in case it becomes a bigger problem. Tbh everyone has a reason why their husband isn't visiting, you would still record it in case it becomes part of a bigger picture. No one ever says "my husband isn't visiting because he's a lazy twat who doesn't like the baby" so if there are valid reasons you would still record it in case more signs came along and it was something more.

It sounds like you just didn't really like the nurses that much and are looking for ways they were wrong.

“sleep you just seem upset that my husband actually slept. We knew full we would get no sleep once the babies were home. He was maximising our earnings and his emotional and physical state so that when she came home we are able to provide for her”.

OP, several times on this thread you’ve mentioned babies (pleural) and sometimes just DD. Did you have twins?