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.

Are you getting counselling to help you deal with everything?

crispy you're the one modelling unreasonable behaviour .

The OP seems to be v reasonable to me .Especially considering what she's been through and the abuse she's had frpm some on here .

No although I've told people about it. I don't really want counselling because I've had it before for a different issue and I don't find it helpful. What help me is time. The more time with my family at home and these feelings will be replaced with happy memories and gain closure as I see her being happy.

If they have concerns, voice it tonop and her DH but its irresponsible to comment from a single observation. There would be a conversation between colleagues, a period of observing which is when the notes were made, and then a decision that there's no concerns.

And why arent they doing more about parents who are having to live on Greggs and other junk food for weeks on end what exactly would you like the cash strapped, under resourced NHS to do? Most already feed nursing (Inc expressing) mothers, some will feed Dad's for that same period, many do some sort of discount comparable with staff discount, and some have restaurants that are open to everyone but many wouldn't have the space. At hospital 1 DH and I both got fed off a ward trolley. At hospital 2 we had a discount for the shop which did sandwiches etc. Hospital 3 we had a discount that included the sandwich shop and the restaurant where they served 3 meals a day. Back at hospital 1 I got fed as I was expressing. Perhaps they could have hired me a personal chef.

OP I assume you're under the doctor for your panic attacks in case they happen when you're on your own with the kids?

because that is taken as a given and nurses should not have to spend the time doing unnecessary paperwork to appease parents.

that would have been my thinking but posters have said that observations are recorded in case something happens

and it would not be to appease the parents it would be to provide a correct record .

without some record that behaviour was deemed to pose no threat to the baby all that exists ,for ever ,is a paper trail of negative remarks .

what happens if things do go wrong after discharge ,the mother has PND ,the baby is neglected ? The records can be referenced and the staff criticised because there were red flags not acted on .

Surely if the point of the observations is to safeguard the baby then there should be an asessment also recorded that things seem fine .Otherwise ,really a) what's the point ? and b) how can staff justify discharging someone with no support when something does go wrong ?

They did note that OP had plenty of family support. If their concerns were support for a stressed out Mum with one poorly baby and a disabled child at home, that would close the query off

They did note that OP had plenty of family support - sorry ,how do we know that ? Was it a written remark or verbal ?

OP said they wrote it down

Thanks !

I just wanted to chip in regarding the issue of suing the hospital.

My situation wasn't the same as OP's as I didn't have a baby in NICU but my DS was very dangerously poorly in utero and it wasn't picked up due to serious failings by the hospital, and he nearly died. I had to look at my options and I decided to go down the route of a debrief and then a formal complaint. The investigation took about 4/5 months (there were a lot of allegations) but most of my complaint was upheld and I got a formal apology from the Trust which I greatly appreciated as it reflected for me the seriousness of the experience for my DS and I (it was very traumatic). I did briefly consider suing the Trust but I thought it would achieve nothing. What I wanted was for other mothers and babies in future to be safer. My complaint gave the Trust an opportunity to examine their practices and make changes and they actually thanked me for that. Suing the hospital would simply have taken money away from a stretched maternity unit, and that might have meant something like that happening again. Litigation is also very stressful, and sometimes people end up losing more than they gain, the desire for justice is understandable but people don't always find the answers or closure they need with a court process.

@MissB83 you handled it absolutely correctly and how I think the OP should. a debrief and formal complaint

@Quartz2208 how the hell can you make that statement when you know nothing whatsoever about the OP's case - or indeed MissB83's. A lot of posters on this thread are very keen to mouth of about things they know the square root of fuck all about. I think the OP has been very dignified in her response to the numptiness displayed on this thread.

because it should be about two things:

1. Making sure that the policies and procedures are put in place to make sure if doesnt happen again

2. Making sure that if the child quality of life was affected money is given to make sure they have a good quality of life

It should not be about gaining money at all for the sake of it

From what the OP has said what she needs is an apology and understanding that it went wrong and her feelings around that are validated and a proper understanding of what happened

It isn't about the money. It's about someone having to be held accountable for what they did. It's about the recognition of the absolute hell they put us through.

There's no real reason why she survived. They did everything and we were told some babies make it and some don't. We got lucky. But we should never have been in that situation and some people won't be lucky. I came dangerously close to losing my child and I still remember the absolute pain and despair that I felt when I thought it was inevitable she would die. It was a physical pain that I can't describe, I remember crying with a different sound and sort of screaming a long continuous scream that continued even when I thought I'd stopped. I will never forget what that feels like. And no one will understand unless they've been in that scenario too. Everyone knows it's horrible to lose a child but you can't actually imagine what it might feel like until you're faced with the very realistic likelihood of that happening. I'm not the same person I was before I gave birth. I don't trust things that I previously would have just taken for granted anymore. I don't believe in anything. And I feel hideously guilty for the babies who don't make it, I did nothing any different to anyone else yet I luckily came out of this with a happy ending another woman will experience the same thing and do exactly what I did and her baby dies. Why? Why did we survive? Why did we have to go through that at all? I'm not special yet I survived a potentially fatal complication and DD survived a likely fatal scenatio. It's questions like these that I can never get an answer to, and I shouldn't even have to be thinking about because It was preventable.

And that's without even going into my daughter having horrible physical procedures that most grown adults won't have to face.

It is absolutely disgusting that people I trusted to ensure me and DD were safe did not uphold their duty of care and we nearly paid the ultimate price for their inattention. It isn't acceptable.

It's also about the greater principle of maternity care being absolutely awful and women treated appallingly.

It's much much deeper than it being about the money.

OP, I do understand where you are coming from and I had the same priorities which was why I shared my experience, just to offer an alternative perspective. I hope you find some redress.

I appreciate you not wanting to divulge specifics and I also get get your sense of distress..... but I feel you have moved away from the original AIBU.

We know you had your baby early but we know nothing else about your situation, so it's not really fair to make comments about taking legal action.

I hope you find peace, whatever you decide to do OP.

@NicuProblem
I’m sorry I came across as judging you. I was in hospital with my baby and if I so much as left the room for a drink I was asked where I’d been. The nurses sometimes came by as little as every 12 hours and I was expected to keep track of my sons temp which was very important given the reason we were there was due to febrile convulsions (good job I took a thermometer with me), I was expected to keep track of his medication and administer it.

I have never been on the NICU tho, I imagine the nurses are much more attentive there, and as you said your baby would mainly be asleep/unaware. I certainly didnt want to insinuate there was any damage done to your child. I wish you all the best.

@NicuProblem -

Nicu parents have higher rates if PND & PTSD - just something to be aware of.

I had a 29-weeker & was absolutely traumatised by the whole experience. I nearly died having DC & there were many close calls in Nicu.

I dint think a thread in AIBU is going to help you at all; it's utterly vicious here & you just get roasted, no matter what you're asking.

There's a premature birth section & that might help you more.

OP - look at this way:

You were doing your job as a parent of a poorly baby AND of an older child with additional needs

The NICU staff were doing their job as healthcare professionals looking after a poorly baby.

They have to jot down concerns when they arise, and a parent not visiting very often should trigger concern, even if that can quickly be dismissed because of the particular circumstances. We would all be outraged if a child slipped through the safeguarding safety net and was sent home to parents who couldn't cope.

Please consider talking to your GP if you are still anxious and tearful about this. They weren't judging you, they were monitoring you in case you needed help. You shouldn't be taking this quite so much to heart, and perhaps you do need some additional help? It must be very hard managing both your DC, especially with DH starting a new job.

Congratulations on your new baby

I'm speaking as a mother with experience of NICU with prem twins. And also as a healthcare professional who works on a different NICU.
In our notes we have a section for parental interaction, it literally asks us to tick boxes for what exact interaction parents had that day with the baby, top and tail, nappy change, kangaroo care, feed etc.
Then on the long notes we have to summarise everything about the baby that day including parents coping, transport difficulties that day and interactions again in more detail.
I personally would be very concerned about a dad visiting once a week unless he worked away. My husband was working 7 nights a week and we had a 1 year old but he still visited the twins daily in nicu, because his children are his world. I would expect a minimum of 3 times a week.
We often have to keep a more focused visiting log despite circumstances because it is an indication of any issues with bonding and/or coping.
I recently had to keep a log on a mother who seemed reluctant to pick up her baby or change any nappies and wanted us to do it all. We could track it all then and referred her to the appropriate professional and she was diagnosed with PND.

@MrMakersFartyParty you are the sort that gives healthcare professionals a bad name. Wanting your wee gloat and pat on the back for how you and your husband behaved in NICU - because obviously how you did it is the correct way to do it, so OP's must be wrong. Your complete lack of empathy shines through your post, particularly in the light of the OP's last update.

@MrMarkersFartyParty

This is your personal judgement though? So completely irrelevant

Your DH worked 7 nights a week and came to the hospital everyday? Sounds like someone who will end up in an early grave. Why didn't the poor man have a day off work?

This is your personal judgement though?So completely irrelevant

So what's the point of Mumsnet then? Everyone agreeing with OP that it's fine for OP's partner to prioritise his sleep and family finances and only visit baby in hospital once a week is also just expressing personal judgment.

I don't think the point of MN is expressing personal judgements .

It's a business that makes money .

It's an entertainmemt .

It's a platform where ppl can do all sorts of things ,some more altrustic than others .

Everyone agreeing with OP that it's fine for OP's partner to prioritise his sleep and family finances and only visit baby in hospital once a week is also just expressing personal judgment.

No, it's people understanding that people have different lives and different hardships. The OP didn't post this thread to ask about her husband anyway.

I don't think that anyone is disagreeing that it's important to keep an eye on situations or to make notes to that effect. What many of the hcp who ate posting here are failing to understand is that if those notes are likely to cause upset to the parents or to exacerbate potential PND then there needs to be a gentler way to do it. There is an emotional aspect to all of these healthcare jobs that we all know is sometimes forgotten. I don't think it's unfair to say that maybe the way that the note taking is done could be looked at.