To still feel sensitive about this and feel it could have been handled better?

[Livingtothefull]

Just to alert you first of all that this concerns traumatic birth and breastfeeding issues so please don't read on if you feel it could be triggering:

My DS is in his late teens so that's how long ago all this happened....but I still feel sensitive and get teary about it all. I feel guilty too that I didn't do all possible for my DS. When other mothers have a conversation about the problems they had with birth and breastfeeding I go very quiet. I feel as though it is in bad taste to talk about it and bring the conversation down - but then I just feel more isolated.

TBH I feel like this now, I feel as though I have no business inflicting this story on the readers, I am really really sorry but I feel this is not nothing so I have to write it down where it can be read. I feel sick though at the thought anyone could be hurt by this so please don't read it if you feel this could happen. The last thing I want to do is hurt anyone. But here goes:

My DS was born at 28 weeks and weighed under 2 pounds. For some time it was touch & go whether he would survive. I had pre-eclampsia and emergency caesarian so I was worried I wouldn't survive as well as DS.

I recovered but DS was still very sick and in an incubator. I remember feeling so different from the other new mothers because they had babies to cuddle whereas mine would have fitted in my hand, there wasn't much of him to cuddle (even if he hadn't been to frail to pick up)

When I was recovering in hospital I remember a 'Breast is best' poster opposite me with a picture of a perfect chubby pink-and-white baby; so different from my little scrap. You could see all the veins in DS body - nobody's idea of a perfect baby.

During this time I learned that DS had extensive brain damage. I was also urged to start producing breast milk for DS. 'When (if?) he recovers he will need nourishment' I was told, 'and that's where you come in!' I was still recovering myself and I think looking back I was in shock, so didn't have the strength to discuss this or question how it was done or whether pressuring me to produce milk was appropriate. 'We understand it is very difficult', I was told, 'but you you need to do this for the sake of your DS'.

Of course this meant trying to establish the flow using a breast pump.

For several days I sat in the mother's room next to DS ward trying and trying again to get the milk to come, to give to my baby lying in an incubator, who I wasn't sure would even survive to need it. This didn't go very well though I did actually get the odd drop of milk to pour into a test tube. I only needed very small test tubes which I labelled up with his name. DS has quite a long name, I remember having to write his name as small as possible to get it to fit on the label.

The worst bit I think was taking the test tubes to store in the 'milk bank'; a large fridge - and seeing the ranks of large bottles of milk with other babies' names on in big confident letters; my little clutch of test tubes looked truly pathetic next to them.

Then DS condition deteriorated and the paediatrician had a frank conversation with us about his chances of survival and that due to his distress and his severe brain damage it may not be in his interest to try to resuscitate him if he deteriorated further.

After that conversation I stopped trying to produce milk, I felt I just couldn't face trying any more. When DS actually did pull through he had donated milk then formula.

I have recovered and so has DS albeit he has severe and permanent disabilities, we have a good life on the whole. I wasn't offered counselling at the time so sought out my own; but tbh the responses from the counsellors about this are looks of horror and sympathy; there isn't really anything they can say. The situation is what it is.

What I want to ask is: AIBU to find, looking back, the pressure to breastfeed and not let my DS down the single most traumatising thing? Were they right to do this or misguided, do you think it could/should have been handled differently? Should I have tried harder & was I right to feel guilty? I don't think the staff were very pleased with me.

Is this handled differently these days? It is crazy that this is the one thing I feel the worst about.

Dear god, Living, of course you aren’t being in the slightest unreasonable. That sounds shockingly traumatic, and you appear to have been treated like some lactation machine rather than cared for and supported as you tried to come to terms with your tiny newborn’s brain damage. I’m not surprised you still feel traumatised. No, you shouldn’t have tried harder. Yes, they should have handled it better. It still sounds to me as if you would benefit from a good counsellor, no one who just is appalled.

Hi OP

No advice as its difficult to know how they said it. I understand breast milk is important for very small babies but that doesn't mean it was ok to pressure you at all when you were recovering yourself physically and had been through an incredibly traumatic experience. No you couldn't have done more, lots of people find pumping really difficult even when breastfeeding is established, there isn't actually much you can do to get more milk out. So even if you had been able to 'try harder' I honestly don't see how it could have made a difference. You have absolutely nothing to feel guilty about - none of what you describe is your fault at all, just unlucky

They handled it very badly. You should definitely not feel guilty. I hope you find some way to get beyond it.

You had a traumatic experience and I think you have fixed on to the breastfeeding issue as being really important when in the grand scheme of things it wasn't.
The breastfeeding thing is a small part of a larger trauma related to worry of having pre eclampsia, having an emergency section, having a very poorly fragile premature baby with permanent disability as a result.
YANBU at all.
I think you need to get some therapy but counselling may not be suitable. You could possibly have something like PTSD. The treatment for that is different.
I'm sorry for everything you went through, it must have been so difficult.
You need to get some help to process what happened.
A friend of mine had PTSD that went undiagnosed for years, she had EMDR therapy and is doing much better.
Is therapy something you can access?

How you feel is how you feel. There’s nothing wrong with that.

I’m sorry you were so badly supported, that sounds very tough.

What you’re feeling is guilt even though you’ve no reason to.

be kind to your yourself what you went through sounds very traumatic.

Having had a very traumatic birth experience myself I want to say i understand how long and deep the effects can be. I also know when I am struggling with it all I focus on stuff that is difficult to explain to others just why it mattered so much - counselling really helped me, i had PTSD so i saw a psychologist as well as a counsellor. I think maybe you could do with talking to someone and trying to work through all this.
When it comes to the breastfeeding, it doesn't sound (just from what you've written) that it was all that badly handled - breastmilk probably did help your son and that's what donor milk is for - he got those benefits. And you tried but you and your son were both very sick, its no surprise you struggled but its amazing that you tried. And i think it's right the hospital suggested it too.
I couldn't breastfeed my son. The guilt of that still weighs really heavily on me. But i tried and, realistically, its probably not done him any harm.
Be kind to yourself and think about getting some support. Being a mum comes with bags of guilt and responsibilty and it's hard hard work.

In the nicest possible way you need to let this go now. It doesn't make a difference to your DS and it hasn't affected anything.

My son was a 24 weeker, I tried really hard with expressing, the same as yourself spent ages in the room pumping to get a lousy few ml, it's disheartening at the best of times. Something happened with my milk (there was an investigation but I never found out the results) my milk was thrown away by someone. I was struggling so much already that I just gave up the pumping altogether from that point. I figured a mum that can be there for him and not drowning in milk despair is better than one crying in the expressing room. You do what's best at the time.

Having a baby as poorly as that is not to be underestimated. Do you think your trauma over the breastmilk could be covering the trauma of the whole situation? I'm not at all saying that your trauma isn't valid, of course it is, I only say this because I've realised over the years that a lot of my behaviours and emotions were misplaced from the trauma of what he went through. I have severe anxiety around my 31 weeker despite her being really healthy because I never really dealt with the trauma at the time of my 24 weeker. Find a good supportive counsellor that can go through it all with you. You need to process this and then move on from it, it's not your fault at all and you shouldn't feel like you failed, having a baby is hard, having a critically ill baby is so hard there aren't words for it, if you're not well yourself and recovering, trying to keep going, let alone putting your body and mind through extra stress of trying to provide milk is a gigantic task.

Hope you eventually get the closure you need on this. Sorry for waffling.

I'm sorry, I don't kniw what to say except you aren't over reacting, and of course they should have handles it differently.

I tried to bf and ended up in hospital trying to pump because DD wasn't getting milk out of me but ended up ff and still feel guilty (DD's only 2) so I do understand a little, but I honestly can't imagine how it would have been if she'd been so ill and small, and I had been ill too, AND she'd been so early that presumably you just weren't ready to make milk anyway, no matter how hard you tried. God I'm getting a bit teary thinking about it.

Jesus, I think you're amazing

Sending you so many hugs. I have so many things to say and not sure they will all come out properly. I went through a similar situation with my ds at birth, thankfully he recovered fully but at the time we didnt know. I also remember trying to write miniature to fit his name on a syringe. I also remember feeling completely shattered, emotionally and physically and feeling very pressured to set alarms to express.
You are told and it is in fact part true (because there is also skin to skin when they are strong enough) that it is the only thing you can do for them but that is because they are being looked after already. It is immense pressure and all you can do is your best which you did.
It's such a horrible thing to go through and at a time when you are traumatised and breeding physical and emotional support in fact you just have this pressure of someone else needing something from you. You did your absolute best for him and that is everything you could do. I think it is clumsily done and there often isn't enough support for women in this situation because all the care is focused on baby and you are almost an afterthought.
I think for some people it possibly helps them in that it gives them a purpose and a focus but probably for more people it just adds stress at an already stressful time. I think part of the problem is that for nicu staff their patient is the baby and not mum and I felt a bit like I slipped through the cracks.
I've rambled on but I think the advice is given with the best intention but maybe without thought for the impact it will have on people where it is not possible to establish milk production. And often not enough support for mums such as showing them how to express and tips on how to encourage milk production when separated from baby. So I think they aren't unreasonable to encourage expressing but there should be a lot more support for mum rather than just getting barked at in a rush and sent off being told to come back with some milk!
I wonder if you have a bit of transferance and are focusing all your traumatic feelings onto this and perhaps you could benefit from talking the whole thing through with someone?
Please be kind to yourself and absolutely know you did everything possible you could for your DS at probably the hardest time in your life.

Thank you so much for your amazingly helpful and insightful responses. This has actually made me cry. Yes I believe I have had PTSD and it is possible I am fixating unduly on the breastfeeding when nothing could be as bad as what my poor DS went through, the whole experience was off the scale horrific.

Please forgive yourself. You were recovering from a trauma yourself and breastfeeding is hard to get established even with babies not born early.
It's the reason why people donate milk is to help in these situations. Please be kind to yourself.

As someone mentioned above, I had EMDR for the ptsd - it was brilliant. It's not that the experience doesn't still upset me but it doesn't haunt me anymore. If that makes sense?
And i fixated on by DS baths - I couldn't take care of him while i recovered and i watched nurses bath him for me. I felt so wretched about that, and such a failure - i had nightmares about it. That was the PTSD and that's what the EMDR helped me sort through. I'm still quite sad someone else gave him his first few baths and i had to lie hooked up to machines while nurses gave him bottles - of course i am - but i don't obsess about it in the same way and i don't wake up crying about it after nightmares.

@Livingtothefull I really think you would benefit from talking this through with the right counsellor. It sounds like you've been dealing with this alone. What you went through was beyond traumatic for both you and your son. Time doesn't always heal all wounds unless its processed in a supportive environment. Bless you. sending you a huge hug x

You're not being at all unreasonable to still feel utterly traumatised by these events. And I don't think you're at all unreasonable to fixate on the additional difficulties being pressured to breastfeed created for you.

I would agree with people who say that you really do need some specialist trauma counselling about this. Knowledge about trauma and how to support people living with it has increased vastly in the last few years - as Boom45 says, Eye Movement Desensitisation and Reprocessing can yield brilliant results.

I went into therapy eight years after my first baby died. I was very fixated on how much worse the 'bereavement midwife' who I saw the next day made me feel. I can now objectively think 'she was way out of her depth in that role and didn't have any idea of what I needed. She made things worse through incompetence and her own issues, ' without feeling that I'm going to lose my mind with rage at some of the things she said and did.

It took quite some time to get to this point but I'm so glad that I stuck with the therapy. I still feel sad about what happened, and find it difficult to talk about, but am in a much, much better place with it.

All the best to you and your ds.

"It's not that the experience doesn't still upset me but it doesn't haunt me anymore."

Yes, Boom45 describes my experience exactly.

Oh my lovely. You couldn’t control his birth and how ill he was. So you feel guilty over the only thing you feel you can be.
My son was born at term. But I struggled for months. Couldn’t produce enough milk for him. Couldn’t express a thing. Nobody ever suggested it was anything other than me not trying hard enough. I felt so guilty and like a complete failure.
Your baby was fed.
You spent your time healing and being with him. That was of paramount importance.
Of my two kids? The healthiest one is the one I didn’t bf. Doesn’t mean I don’t feel guilty though.
because you’ve had an insane amount to deal with.
Hope my ramblings make some sense.

I’m sorry you went through that OP.

My daughter is 17 soon. She was born at 29 weeks, via emergency c-section, as I too had pre-eclampsia.

I remember trying to express breast milk, in a little room, on my own, using the horrendous milk machine. I wasn’t able to express much more than a few drops each time either. The nurses were brilliant. I felt no pressure and they were very kind and understanding. The little milk I did manage to express was given to them and they put it in the fridge for me. When I told them I couldn’t do it anymore they understood and asked me if I would agree to them giving her breast milk that had been donated by other moms. I never once was made to feel how you were.

To answer your AIBU - no you’re not BU! The nursing staff were! It definitely should have been handled differently and you did the best you could at the time. Please don’t feel guilty. You were very ill yourself. Your body also wasn’t ready for your beautiful DS to be born yet. This is how one of the nurses explained it to me when I asked why I couldn’t feed my baby. 💐

Op as someone who has been a midwife over 35 years.. i am so sorry for your experience,
Like others its difficult to know if it was handled badly but i do know it's how its made you feel that's important now
You have experienced two of the most traumatic events to happen in childbirth and we are learning more all the time about the psychological long term effects this can have on some women and their families
I agree with finding some support for you to help you process your thoughts and feelings
But also have you considered contacting your local maternity unit where you had your DS and speak to the Head of Midwifery, most units have a senior team who are happy to spend time with you debriefing from your records. I have done this many times and many women and their families have find it a useful additional tool to understanding and in some cases coming to terms with what happened
FWIW i think you are amazing and did all you could at the time which was no question an extremely traumatic experience sending you hugs and

I’m not excusing the staff for their treatment of you, but I think they may have been well intentioned. They will have known you were feeling overwhelmed, ill and excluded from your baby’s care, while he was wired up in an incubator, so they probably suggested breast feeding as a way for you to feel involved and feel that you were helping in his nutrition.
I doubt they stopped to consider that it might be difficult to establish a milk flow in the circumstances, and that it would add to your pressure and cause unnecessary guilt if you were unable to produce much.
OP, you need to be kind to yourself. Let go of any guilt - you coped with an awful and traumatic time and did your best. You should feel proud of yourself for getting through all that, and for looking after your son ever since. I echo several PPs that talking it through with an understanding and well trained therapist would help you to put it behind you. Nobody is judging you a failed mother, either then or now - you’re an epic survivor. Give yourself credit for how you’ve coped. And have a hug from me.

I also had a very poorly premature baby - it's a hugely traumatic experience, you're never the same after seeing/experiencing some of the things that go on on neonatal units.

I think breastfeeding is emotive at the best of time. While neonatal units are keen to get mums to express as soon as possible, it's not really acknowledged how hard this can be.

I think it's almost inevitable to be at risk of PTSD after your experience & think you'd benefit from talking to a counsellor/trauma therapist. You've been through a very tough time and it sounds like you'd really benefit from processing it with someone.

Sorry that you had such an awful time OP.

It might be worth visiting and GP and discussing this with them to see if they can refer you on for an appropriate talking therapy, or help give you some closure just by chatting to you about everything?

I visited my GP after I had DS as I was struggling to get over a couple of things relating to our care in hospital after he was born, and it was affecting me sometimes in every day life. It was just over a year since his birth and the GP helpfully got me an appointment at the hospital to have a thorough de-brief about everything. I found this massively helpful and really felt a sense of closure after this meeting. Obviously it was a long time ago now, but maybe if you had the chance to talk to someone like I did it might help?

Of course YANBU. I know two separate women who developed serious, long term PTSD after traumatic birth experiences. I wonder if you could revisit counselling? It may take a while to find a good fit but it does sound like it would be worth dealing with all that you've been through.

I think it's obvious to an outside observer (and probably very difficult for you to see from the inside) that it was handled badly and you were not supported well.

OP, you went through something too. In your update you say that it was your DS, but you both suffered trauma and you shouldn't feel you have to minimise it.

My first birth is very similar to your own - my son was born at 26 weeks weighing 1lb 14.5oz as I developed eclampsia, and had a seizure in the operating table as my baby was being delivered. I was in intensive care and almost died. My baby almost died too and was in intensive care and in hospital for a total of 3 months. He had severe cerebral palsy and we very sadly lost him at 19 when he passed away in his sleep due to an undiagnosed heart condition.

After I came out of intensive care, I expressed milk and I hired two machines so I could do this round the clock. I felt like a milking machine and like you I definitely didn’t produce as much as many others did. I think at the time I was living day by day, every morning I phoned the hospital before I left home to spend the day with him - I was given a brief update, Weight, how he had been during the night etc. I never had any ‘bad’ news, after the news on day 3 that they had found a bleed in his brain. I just kept going, doing what I could, compared to all the things I couldn’t do. I remember coming in one day and one of the nurses had given him a bath. I was so upset, called a meeting (!) and had it written in his notes no one was to bath him but me. I think what I’m trying to say is, it was a tense, traumatic time and we all deal with experiences like this in different ways. I was told that breast milk was so important and it was a way for me to do something for my baby. The nurses didn’t pressurise me at all and they said there were donors if my milk supply needed topped up.

I do think that after all this time you should be able to talk about this without feeling so upset. I totally understand how the whole experience has been traumatic, but I think you need more specialist counselling to guide you through this. You may be struggling with PTSD and the counselling offered to support that will be very different to other types.

I really feel for you and I hope you get the support you need.

Oh thank you all so much. I am sorry though that so many have been through traumatising experiences like this and for those who lost their DC...I am so so sorry.

Some of the suggestions re other types of therapy available are something I will consider. I thought I had exhausted the counselling route; what I have experienced through this is just a sympathetic listener without any specific interventions.

This has really helped me get some perspective on why the breastfeeding issue was being pushed so hard, that it might have been intended to be helpful to me as well as DS. I still feel that it could have been handled better - I think I could have been spared the 'milk bank' for example - but I accept that they were well intentioned. I certainly don't feel bitter and have no interest in blaming anyone.

I think it is very possible that they didn't realise how traumatised I was as I was outwardly calm and always civil. But I remember how incredibly sensitive I was at the time, I could be reduced to tears by the most innocuous comment - mostly though to family/friends, at the hospital I was trying to be cooperative and maybe that was misread.

I didn't know Carblover that it was still possible to contact the maternity unit where I had DS. That is something I may consider so thank you for that, I may need to be clear to myself first about how I feel it will be helpful and how calmly I can revisit this.