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NICU staff being judgemental.
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NicuProblem · 06/02/2019 09:31

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.

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ItsHardToExplain · 06/02/2019 09:55

You didn’t let your son down at all Flowers
You did the best you could in a bad situation.

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HoppingPavlova · 06/02/2019 09:55

Did the notes actually use the words ‘concerned’ and wrong or is this what you are reading into it?

They do need to look for signs of possible pnd etc as part of duty of care and maybe they factually recorded things that are potential signs, not judging you as such.

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QuickSharpSloe · 06/02/2019 09:56

I’ve been there. Our 5th was in and we had a child with disabilities. We found it easier for all to emotionally split. Our autistic child needed stability and routine and the switching parents for different things caused huge upset and weren’t coping with the lack of sleep and meltdowns so he did all bedtimes, drop offs. It was sensible as I pumped. We had four other to manage. He also had to work, as I wasn’t. It was hugely stressful and this would upset me. I’d have loved to be both parents there 24/7 but we couldn’t, bar having 4 others including a disabled child running amok. We didn’t have support. It was fucking hard.
Write a neutral informative letter about your experience and how you felt. Maybe next time for another family they will broach more conversations and understand different circumstances better. Maybe instead of monitoring it will lead more to a culture of talking to people better, or adding parental comments to diaries or something. Maybe that culture will help someone not coping or even just incline staff to think about emotional and practical issues more when interacting. It doesn’t have to be a complaint, just feedback from your perspective acknowledging the care but sharing your experience for future learning

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MaitlandGirl · 06/02/2019 09:56

When my daughter was in the NICU the staff commented that I was always there and raised concerns that I was potentially neglecting my other children. They were with my parents, then my SIL.

OP - you did the best you could, that’s all anyone can do in that situation.

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NicuProblem · 06/02/2019 09:56

Not when the mother is there almost daily. If neither of us visited, neither of us rang, and showed no interest in the baby then I would understand. But when one parent is there almost every day and the other is at work, and neither of us drive, and we have to cater for our older child then no I don't see why that would be concerning. We split the labour how we could. I was better with the children and he was better earning. That's generally how we divide our labour although he is a hands on dad when not at work.

They did keep asking me if my husband helps around the house too and I now feel that was because of this.

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NicuProblem · 06/02/2019 09:57

MaitlandGirl seems like whatever we do isn't good enough.

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NicuProblem · 06/02/2019 09:58

Quick I understand. My child has similar difficulties. That's a good idea, because it's really unhelpful when you're having a rubbish time to feel people are implying you're not doing a good job.

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NicuProblem · 06/02/2019 10:00

When you baby is just asleep in a box all day and night is there much point running yourself into the ground being there every waking hour

This is also how I rationalized it. I hated being away from her but when my older child needed me, and DD was mostly sleeping then sometimes I rationalized that she was cared for, safe and comfortable and she wouldn't remember it whereas my older boy was getting anxious I wasn't there. I did what was best for all of them.

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ReanimatedSGB · 06/02/2019 10:01

It sounds like they have a very limited, normative idea of how a family should function. Unfortunately quite a lot of people whose circumstances are reasonably comfortable have no understanding of those who eg have no transport and no financial safety net, therefore daren't risk losing a precarious low status job by taking extra time off; or the fact that the parent of a sick baby might have other DC who are equally high-needs...

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ASundayWellSpent · 06/02/2019 10:01

I can understand why you would feel judged when you were just trying to be doing your best with a difficult situation, I would too.

That being said, what they noted wasn't inaccurate. They couldn't lie on the log and say you were there when you weren't.

Also your DH only going once a week is really poor. I thought you were going to say that he was working double shifts as an on emergency call surgeon or something that really took a high priority, not that he was working as a waiter and that being rested for that shift was more important than spending half an hour visiting his poorly child. Sorry if that sounds harsh but I agree with the staff its poor.

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IAmWonderWoman · 06/02/2019 10:01

It sounds pretty standard thing to record because it could raise concerns for how the family are coping or about the support so they need to monitor that.

There is that, and unfortunately on NICU and on the wards some parents just don’t visit. Also some babies need to go home with feeding equipment and oxygen etc and it can make training parents really hard when they don’t come in.

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NicuProblem · 06/02/2019 10:01

Explain thank you. He still seems upset by it and keeps asking if he needs to stay with the doctors like mummy and his sister.

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Fruitbatdancer · 06/02/2019 10:01

They flagged it, they monitored it, nothing came of it. I can see why you may be upset but they are just doing their job, they perhaps have people who tail off visiting and it can be a sign of not coping/ PND, other underlying issues in the home. Some staff may have been aware of your circumstances but not all would. And they can’t have one ‘rule’ if you like for one family and another for others. I can’t get het up about other people looking out for my child/ me- especially if the outcome is that nothing was raised/ nothing was of concern.
Was there a reason you requested your notes? Sounds like more to this?

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NicuProblem · 06/02/2019 10:02

Unfortunately quite a lot of people whose circumstances are reasonably comfortable have no understanding of those who eg have no transport and no financial safety net, therefore daren't risk losing a precarious low status job by taking extra time off; or the fact that the parent of a sick baby might have other DC who are equally high-needs...

That's how I feel too.

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Claw001 · 06/02/2019 10:02

My son started life in the SCBU, he needed 24/7 phototherapy, tube fed, splints on both arms, no nappy etc. I couldn’t feed him, change a nappy or hold him.

I had 2 other children, I couldn’t be there 24/7. Although I was there daily. My son’s dad, didn’t visit once! ‘Phobia’ of hospitals, depression and couldn’t handle everything not going smoothly.

I have no idea if this was logged. 14 years later I really couldn’t give a shit, if it was! If it was, it has had zero impact on our lives!

Ask for it to be amended or forget about it and enjoy your family Flowers

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Tinty · 06/02/2019 10:02

OP I hope your baby is all better now. I'm sure you love your little one to bits and so does DH. Everyone reacts differently to stressful circumstances, ie a baby in NICU. Your DH was doing the best 'He' could at a difficult time for your family. How is DH and babies bond now?

I expect they have to log it because they may be worried about PND and bonding with baby if you aren't constantly at babies bedside. But even mothers and fathers who are there constantly, can still get PND. With a sick baby it is probably slightly more likely and they are concerned about that.

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NanooCov · 06/02/2019 10:03

Hi. Is your little one home from NICU now? If so, although I recognise it has upset you, I would say just let it go and move on. If the baby is still there and the pattern of visiting is the same, it might be helpful to have a discussion with the staff to explain why the visiting pattern is as it is.

For what it's worth, I think that logging the visiting pattern was possibly more around seeing how you were getting on and watching for signs of post birth trauma or PND in you, rather than safeguarding concerns for the baby. Either way, it is part of the staff's job to look out for possible problems in preparing baby to return home (regardless of family circumstances) and a father that doesn't visit much probably did raise questions.

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NicuProblem · 06/02/2019 10:04

Fruit potential negligence at birth, got mine too.

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TinklyLittleLaugh · 06/02/2019 10:04

I think most people would be a little taken aback that a father would only visit his poorly baby once a week. Its not how my own DH would have/has behaved.

I hope things are easier for you now OP, it sounds like you’ve had a really tough time.

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Nighttimenope · 06/02/2019 10:06

We didn’t have nearly as difficult a situation as you but it was still impossible. Husband was back to work, I was home looking after 2 year old and poorly myself. She was too young to visit the NICU so couldn’t take her with me. Family close by but rubbish support and didn’t help really at all. Husband would work all day, come home to eat together and I would go to the hospital for a brief two hours every evening to drop off milk and cry by the cotside. Husband could only visit instead of me, and I couldn’t cope with not going. And we could drive, and our child didn’t have disabilities. I felt literally shredded in terms of responsibilities and helplessness. Hated it.
The staff were amazing though. I/we never felt judged and I certainly couldn’t have coped if I did. Is this something Bliss might offer support with before you take it up with the hospital? I don’t know if it is. Just thought they might be in a good place to talk it through with you and leave you with more confidence in how you’d like to proceed. Thinking of you.

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Loseitandkeepitlost · 06/02/2019 10:06

It was an observation not a judgement.

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ILoveMaxiBondi · 06/02/2019 10:07

Message withdrawn at poster's request.

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NicuProblem · 06/02/2019 10:08

She's home now yes. DH is lovely with his children. He is a very caring father, although I would say he is somewhat overanxious.

He was also wary of coming in sometimes because some nurses tried to push him into things he didn't feel ready for. She was tiny and he was afraid of hurting her accidentally so didn't want to get her dressed especially while she was on oxygen. He was also afraid of having a cold unknowingly and giving it to her after a chest infection set her back days.

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trulybadlydeeply · 06/02/2019 10:08

I agree that it would be a good idea to write a letter outlining your experience, and how seeing this in the medical records made you feel. Medical records cannot be amended, but you can ask for a copy of this letter, or a summary of your experience, to be added to the medical records. What you don't want is for any subsequent medical professionals who treat your DD to see the NICU records and make assumptions about your family.

It sounds like there could be some learning opportunities for the NICU, to take into consideration the whole family situation - siblings, disability, family support, access to transport etc.

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NicuProblem · 06/02/2019 10:08

Waiters don’t work through the night

He worked until 1am some nights from 3pm that day.

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