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.

OP I'm so sorry you went through this and are feeling you were judged when you were at your most vulnerable. It sounds like an incredibly difficult situation that you managed as best you could. I'm sure ideally your DH would have been there more but with family/work commitments and not being able to drive it must have been very difficult.

I hope your DD is now better and that you can enjoy being together as a family again.

It doesn't sound like you had enough contact IMO and I say that as a parent of a poorly baby who was in special care. I was there everyday for ward rounds and handovers plus several hours a day. DH would also phone at night and visit daily. I stayed over most nights. This will sound horrible but the staff aren't concerned about your husband's work or your other child. They are concerned about your input in the baby. They've noted something accurate. We spent a lot of time there and the staff would note when parents were there, who was feeding and changing baby, interactions between parents and generally how interested they seemed. Our baby was discharged as early as she could be safely because we were always there. For every feed and every nappy change one of us was there even when she was tube fed because we are her parents and she needed us including through the night. Another very young couple opposite had a baby who was healthy enough to go home by that point but they only visited every few days and cuddled baby rather than doing practical things. They wouldn't discharge him and there were a few heated arguments on the ward. It's hard. God I remember how hard it was but we made it work. With DHs work, with DHs older son, with the cat, with a 1.5hr drive from the hospital to home, with me poorly from a c section, we made it work because DD is still our baby.

Why would they be concerned about the dad only visiting once a week? He might be at home looking after the other kids. How odd.

Do you really not see why the babies Dad only visiting once a week was a concern

No. He might not even be around (not in as having buggered off and left pregnant mum but for other reasons). What would they say if someone's other half was in the military - "why did she even get pregnant if dad is away for 6 months"?

I am sure there are loads of families out there who don't fit the "perfect family" mould and it's very strange that experienced hospital staff would be making judgments.

OP I had a "normal birth" but my notes have all the way through that I was "determined to go home". This was obviously unacceptable as well as it was noted several times. I did want to go home because the hospital was uncomfortable, too hot, I couldn't sleep and I was scared of getting an infection.

Remember, pregnant and new mums don't have brains and aren't allowed to make decisions for themselves.

No not you OP. I was referring to a PPs story of children on a children's ward aged 0-2 receiving no visitors at all.

This was me and yes, we do involve SS if we see instances where a family are not interested in their child and do not call or visit often.

We have had instances where the babies/infants have been discharged into the care of foster parents instead of being allowed home with their birth parents.

Sorry not read all but I guess we must have the same in our notes. Dh would visit for an hour at most once a week. He hated not being unable to do anything and he was never keen on the baby times. I visited over night 9pm to 5am as had to drive hour back to take over childcare whilst dh went to work, he'd come home by 8pm and I drive one hour back to hospital

How is it going now you’re at home with the baby? Do you get any support from DH? Is your older child still demanding a lot of your attention?

Staff can be very judgemental sometimes. My baby had to go to SCBU, one nurse appeared to judge me because I didn't visit straight away.

The fact I was very ill and in theatre apparently wasn't a good enough reason...

crockof, I bet your notes say you’re making an enormous effort to be there, which you were. I remember a couple coming in at 1am when I was up expressing one night, they’d been to a family wedding and missed seeing their son for a few hours so they came in after the wedding!

I suspect the people saying they would have been at the baby's bedside 24 hours a day have not been through the NICU experience. It's a weird limbo state where you know you have had a baby but you don't actually have your baby! Premmies are generally not ready for human stimulation. They sleep most of the time. At one point ours was only allowed out of her incubator for 20 minutes a day as she was having light therapy for jaundice. Lots of the parents have had a stressful time too - with a difficult pregnancy or traumatic birth. For me, getting to the nicu was hard - it involved a mini cab journey over speed bumps and a long slow shuffle across the hospital with a fresh section wound. I'd been going home for lunch or making do from vending machines while my baby was in. I needed to eat properly both for my recovery and my milk production. I found out as they were readying her for discharge that there was a hospital cafeteria. No one had told me and there were no signs near the nicu. Anyway, there are lots of things I could complain about, some big, some small niggles. I didn't feel listened to by some of the nicu staff and felt judged by others. It's a horrible experience. No wonder a lot of nicu parents experience ptsd.

Pears nurse here. I would also be concerned that a dad only visited once a week.

one nurse appeared to judge me because I didn't visit straight away.

How so? Was it a look? A glance?

It's very hard when your baby is in NICU - my twins were prem and spent 11 weeks in hospital. I used to spend all day there with them and then dh would go in after work from 6-9 every evening (fortunately we didnt have other children to look after). I remember a nurse leaving their notes out and I managed to sneak a quick read and it said that 'mum fails to phone during the night to see how the babies are'.

I was mortified! I'd spent all day with them and dh had spent all evening but it was noted that I didnt ring during the night.
I made sure I always did then - even though they were usually too busy to answer the phone on the ward anyway!!

eurochick I was with mine 24 hours a day, despite having been really ill with the second. I was lucky that they had a project where I could stay in the room with her, they brought me breakfast etc. They had to encourage me to spend more time out of the hospital in the end! Everyone reacts differently.

NicuProblem

I'm sorry you had such a difficult time around birth and in NICU, and I'm glad your daughter is safely home with you now - I hope she's doing well.

I work in P(aeds)ICU, not NICU, but we also often log visiting. How it tends to happen is as follows -

Someone mentions (for example, in handover) that the bedside nurse hasn't seen either of the parents today, or that mother seemed very quiet today, or whatever the particular (low level) issue is.

As it can be hard for an individual nurse to pick up a pattern (due to working shifts, also looking after other patients etc) a decision is made to monitor visiting over the next couple of weeks.

Meanwhile, either the bedside nurses or a more senior nurse will take the opportunity to catch up at some pint during the day and find out how the parents are, what their other responsibilities are, what support they have etc. These conversations simply happen in passing at the bedside, not as formal meetings or anything.

This means that over the next week or so there is a factual record of visiting and more detailed general information on the family circumstances. From this it is usually clear whether there is anything to be concerned about or not.

If there is no concern, as obviously in your case, you may never know the monitoring even happened. Concerns may arise regarding mother's mental health, family support, family interactions, child protection concerns etc etc - we see a huge range of different families from different backgrounds and need to know where to signpoint for help/support.

One other thing - had you requested your daughter's notes in our trust, you would obviously have received them, but an appointment would have been made for you to go through them with a member of staff who would have been able to explain things for you.

Hope this is useful.

I would try not to take it to heart. Could it be that there was concern (rightly so or otherwise) that mum maybe struggling and dad doesn't seem supportive. As I say this was not the case for you so i imagine nothing ever came of it. I can imagine it causing upset but i suppose in the grand scheme of things it's a good thing that they keep an eye out to try and spot families who may be need extra support?

All that aside it sounds like an awful situation for you and your family and I hope that your children are doing well xx

This is going to sound awful, but once a week is ridiculous. My husband does a significantly more taxing job that waitering for days which are often way longer than 12 hours and he would (and was) there every minute he could get. If you were only visiting for short periods (which is the impression I get from ‘mornings or afternoons’), once a day, then I can totally see why they might be surprised, disappointed and concerned. NICU babies still need to bond with their parents.

From my experience with SS - these would have been warning signs. Even though there were good reasons.

In fact noting down these observations would be useful if you needed to get extra support. Having a disabled child means that of course you could have done with extra support. In an ideal world there would have been far more support available for you and your husband.

Being "Surprised, disappointed and concerned" by someone's parenting aren't medical issues.

Keeping an eye in order to support parents who may be suffering from depression and normal safeguarding - fine. But NICU staff have no business being "disappointed" in people's parenting.

I would send a letter expressing my own disappointment in the record keeping in my notes and asking for an explanation of the medical or safeguarding necessity of such observations.

One other thing - either parent being reluctant to do cares / dress / feed their child (when the child is well enough) would also mean that the staff were a little more vigilant about watching for a pattern that would concern - after all, these parents will be taking the child home soon, and if extra support is required it's best to find out before that.

(Again, obviously not in your case, but it's not possible to know this in advance without assessing/monitoring)

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
But what he was doing was important for his family. What was going to pay for the roof over their heads and food for them all if he hadn’t been working? I imagine if he’s a waiter they don’t have thousands of pounds sat around in a ‘just in case’ fund and there is very little compassionate leave for some workers. On the other hand a top surgeon, I imagine has some savings and a bit more spare cash to see them through the current crisis (travel costs, meals/snacks at the hospital/take always because you are so drained you have no energy to cook) and can probably get a bit of compassionate leave granted to visit his poorly baby.
Some people have absolutely no idea about living on a budget do they!

being a waiter isnt that taxing and his daughter should be a priority.

Spoken like someone who has never done waiting/bar work. I've done both and as well as being on your feet, dealing with customers can be very taxing.

When DD was in NICU, there was a baby opposite whose mother was taken on one side (but not enough, because I heard it) and told very firmly that if she wanted to establish breastfeeding, she had to be around more often. Like you, she was trying to split her time between her older child and the baby. It made me appreciate how fortunate I was that DD was my only child, if you see what I mean.

Also - DD's notes also kept tabs on us. I didn't realise because you didn't normally see the notes but one day they left them and I read them and it noted the times we were there, both separately and together (and I was there pretty much all day every day - DH went back to work and he used to drop me off at 8am before he went to work, go to work, come and collect me and stay for a couple of hours, and then we'd both go home about 8pm). One afternoon I'd had to leave a bit early for some reason - I can't remember why now, I may have had a doctors appointment of my own, and I remember crying because I didn't want to leave her on her own. I was a mess of hormones. Anyway, all of that had been recorded in the notes. They may well have had good reasons for doing it but it made me feel like I was being watched by the nurses and judged, as you say, for the remainder of my time there - I started to think was I being judged if I was crying, was I being judged if I wasn't sufficiently upset that day, what were they looking for, was I "a good mother" or not?

@Toddlerteaplease

Why would you be concerned? The dad works nights, sleeps days and looks after other (disabled) child inbetween.

Mum visits regularly.

Can you tell me what the problem is..... in an official capacity (not your own personal judgement!!)

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

The class bias is strong on this thread. Middle class dad, it would have been fine - even though as a professional he would doubtless have a contract that included compassionate leave and could afford have savings. Minimum wage dad working every hour on a zero hours contract to keep a roof over the families head - slacker.

OP, there are some truly heartless and clueless posters on this thread. I would disengage as you have no need to justify yourself to these sheltered empathy vacuums. You should be proud of yourself and as others have suggested can always ask that your version is added to the notes.

HRTFT (yet) but also, what Eurochick said. You spend hours sat by the side of a goldfish bowl. Nothing is happening except the odd sensor going off. DD was born a few weeks before Christmas. Everyone was so impressed I'd written all my Christmas cards, all my thank you cards, "with a new baby". I did it all sat next to her, there was nothing else to do. They wouldn't let you read a newspaper in case of germs. Once she was tube-fed, every three hours I could hold the syringe. Every six hours - ie, every other feed - we were allowed to touch her to change her nappy and at some of those feeds I was allowed to try to breastfeed her. The rest of the time I was expressing in the expressing room, and just sitting there. To this day Valerie by Amy Winehouse makes me cry because the radio was always on in there and they were playing it all the time. And then overnight you couldn't stay even if you wanted to.