How do I stop comparing 'typical' children to my severely disabled one.

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DS is 9 and severely disabled following oxygen deprivation at birth. For 5 years we never questioned the birth injury but then decided to seek legal advice because it was becoming clear just how severe the disability was and we needed answers. 1 year ago the report came back to say DSs injury was entirely avoidable and the midwife should have recognised the problem immediately and acted. Instead she gave advice that could have resulted in my and DSs death. DS was effectively stillborn and resuscitated.

Until this point I had accepted DSs condition as something unavoidable and just one of those things and was as happy as I could be considering the difficulties we experienced.

Since the report I have been mentally devastated. I've had counselling twice and meet up with parents in the same boat, but I can't stop looking at 'normal' children of DSs age and dissolving mentally. It's like a hurdle I can't get over. Before it was 'it is what it is' and not an issue. Now it's knowing my child should have been running around, talking, able to eat normally and a typical child but for one lazy midwife, is destroying me.

All I want to do is go back in time and change things, but obviously it can't. I'm stuck in the mental limbo of not accepting, which I had done before, and I don't know how to get out of it. So advice please on how to move forward and back to where I was before the report came through.

Oh OP I'm so sorry that you are going through this. I don't have any advice for you but I'm sending hugs to you and your son xx

What a devastating thing for you to learn, that your son's disability was entirely avoidable. I have no idea how you move forward, apart from knowing that it's completely ok and normal and understandable to feel the way you do.
Sending love to you all

Maybe a different type of therapy would help you accept what is. I'm having hypnotherapy for a similar lack of acceptance of how my life life/opportunities etc have been affected by certain child-related circumstances. The resentment I feel towards other families with NT children is unreal and was taking over my life. I do feel the therapy is helping somewhat. EMDR is another possibility?

I'd like to tell you comparison is the thief of joy, or other such platitudes, but you might hunt me down and hit me over the head. Life with a non-NT child doesn't necessarily suck, but your dealing with a loss - of expectations of what you thought your life with a child was going to look like, and that bit DOES suck (IMO).

Hugs

If the report was for compensation, they might have framed it in definite terms so you can get through the bureaucracy. But they weren't there, and they don't know why the midwife acted as she did. Maybe it was unavoidable for a reason they're unaware of. You still need the assistance though.

Thank you for the hugs xxx.

I think I might try more therapy. I had EMDR after the birth and it helped then so maybe try again. I can feel depression creeping up on me and it frightens me that it will affect my parenting. I know all the platitudes and have no desire to hurt anyone, don't worry.

I can't explain how I feel... I had accepted our new reality before this report came through and had let go of the plans and dreams I had for that child, but this has floored me and I'm struggling to come to terms with a new 'new reality'. The comparing to other children and happy families swarming around us is a killer. I even feel guilty if I enjoy time with my lovely 5 year old.

Maniak. There is no doubt in the expert midwifes report the midwife acted negligently. It's not a case of what the background is but what was and wasn't done. That night the maternity ward was exceptionally busy but that isn't an excuse for ignoring a life threatening situation and causing a devastating delay in CS.

Any parent will tell you no amount of compensation is worth a damaged baby so that's not an issue here.

You are right, no amount of compensation is worth it, but it would help to secure your child's future and make life easier for the whole family so I hope you are pursuing that. But you must do what feels right for your family.

As for coming to terms with it, I don't know, its recent news, an added rawness, so maybe some fresh counselling might help.
Give yourself time x

Of course the compensation isn't "worth" it! I didn't mean that. I just meant that was the purpose of the report. For a lot of mothers here where I live, compensation is linked to specific diagnoses, so experts will push through diagnoses that they may be uncertain about because that's the way the system works and the child could benefit from therapy. So the expert midwife in your case might have felt that assigning negligence is the box to tick, so to speak.

But how could she know for sure 9 years later? It's an educated guess. Nobody knows for sure how things would have turned out if there had been a different midwife or if the place had been less crowded. I'm not trying to defend the staff. I know they can be awful at times and mess up, believe me. Few people loathe health profs as much as I do. I just mean for the way you are thinking. You are imagining a parallel life for your son that never existed, as if it could have existed.

A man killed my sister and a lot of my life has been thinking that over. What if I had called her. What if I had gone up there. What if he had been stabbed in the eye a day before. So that's where it's coming from. That thinking just goes nowhere because those parallel realities don't exist. It's just imagination. I'm just concerned for you because unlike my sister your son is still alive, and before the report he was who he was (?), but now he's like a worse version of what he could have been (?) That's hard to deal with.

OP, I have a friend who is an obstetrician. She says she lives in terror of this happening because her ward is so busy and chronically understaffed that it is literally impossible to follow correct procedure. She has x patients, she knows that to deliver their babies correctly and safely will take twice as many staff as the ward has, so she is constantly having to cut corners and make decisions about which patients it's safe to leave and which patients it isn't. She says literally any parent who sues will find that she didn't follow correct procedure. Because she doesn't have the time or the staff to do so.

The Adam Kay book is similarly terrifying.
When you're dealing with an emergency and an emergency bell goes off in another room - what do you do? Do you leave the current emergency and think 'It'll probably be fine" or do you ignore the bell and hope like buggery the other emergency is less serious than this one?
When you've been up all night, when you haven't had a holiday in over a year and haven't slept properly in over ten. When you are chronically sleep-deprived, you've just come from theatre and suddenly you're faced with a difficult situation, it takes you a while to get your head around that. You ought to know what the right thing to do is, and most of the time you do, and do it, but sometimes you make a mistake. It's inevitable. Adam Kay says that every clinician on a labour ward carries dead and disabled children with them.

What happened to you and your child is awful, and I'm so so sorry that you both have to live with that. I've obviously never met your midwife - maybe she really was incompetent. But I know my friend isn't incompetent - she's a very intelligent and dedicated woman. But she will make mistakes like this in her career. Not once, but many times.
Knowing the hours she works and the amount of sleep she's able to get, I can't see how she can avoid it.

I don't think it is 'one of those things' - I think the state of the NHS is criminal. And going private isn't much better, because when something goes wrong, women and babies are transferred off those lovely comfy private wards and into places that actually have NICUs and SCBUs and all the rest of it. But perhaps it would help you to know that your midwife may not have been incompetent. She may just have been working within the system we have.

Ted I am hoping that time will help, but at the moment it's getting worse not better. I was in a good place before this, but I think I am going to look at counselling again. I'm pretty sure all the stress of the court case isn't helping. Constantly waiting for reports, responses and more waiting and delays. I've heard they are hoping my child dies before they have to settle, so far 5 years of waiting and no end in sight. It's hard to put it out of my mind because we are waiting for a response and life is on hold. Endless waits for equipment, worsening health issues with DS, so I think it's just getting to overwhelm me. All I want is the equipment and therapy Ds needs now and not in a few years when it won't be so useful. I am trying so hard to do what's best for him but it seems to be going backwards. I'm sure if he was making slow but steady progress I wouldn't feel this way.

Maniak. I am so sorry about your sister. I can't imagine the pain it has caused your family. In my case we have documentary evidence that I asked for advice with symptoms of internal bleeding which the midwife ignored causing the birth injury. There is no doubt or mitigating circumstances for her I'm afraid, it's very black and white. I can't go into details but the equivalent would be if your sister had called the police and said her ex was knocking on the door threatening her and the police had said, call us back in an hour if he hasn't gone away. Honestly it's that black and white and it's one of the reasons I feel so guilty. I should have insisted on being seen and examined but I trusted what she said.

Of course you trusted what she said. I would have done too. So would most of us.

I also think it's completely okay to grieve this. That as parents we do have a habit of pushing down our emotions and getting on with what needs to be done. I wonder if you were 'okay with it' for five years because you had to be for your son, and now this report has triggered a lot of grief which never came out then.

This shit is really complicated, and what you're all going through sounds so so hard. You are allowed to fall apart over it. It would be worrying if you didn't.

cheerfulMuddler. Yes, the NHS midwifery services are horribly underfunded and inadequate. I used to work in the NHS too so know how pressurised and short staffed it is and how easy it is to slip into giving rote advice because it buys you time, but only after actually listening to what's said to you. On the night DS was born the maternity unit was really busy and frantic, so I can understand why the midwife didn't take me seriously. I do think in maternity service the attitude is complacent because even the most disastrous births usually have good outcomes. A midwifery student actually said to me that incidents occur very slowly in labour and gives you plenty of time to intervene which is utter nonsense, but if students learn this in training what hope for qualified midwives?

I swing between feeling huge anger towards the midwife because she brushed off my concerns without listening, and sympathy because she also has to live with her mistake. I remember her look of utter shock as they rushed me into theatre.

I just want it all to stop. I almost regret seeing a solicitor but I know my son needs lifelong care now.

cheerfulMuddler. I really was ok with it for many years. Not at the beginning, but I truly believed it was just one of those things and that quick action on the part of the hospital had prevented things being even worse. DS is intellectually unaffected so it could have been worse. I am normally an optimist. It is learning it was avoidable which is hard to come to terms with. Hence all the looking at normal healthy children and realising it should have been DS too. I know I need help to find that firm ground again I just don't know how to do it ☹️

I've seen Adam Kay live and read the book. It chilled me as I could easily have been that mother.

(((hugs)))

Nothing like you, but my middle dc was born without her left arm. She's nearly 16yo now and occasionally something still hits me out of the blue. There's nothing (as far as any medic is aware) that could have been done to prevent it, but there are times I feel guilty and wonder how she'd be with two arms (although she manages perfectly well most of the time)

You do grieve for what might have been, and for the child you expected and didn't get, even while loving the one you have. For me a lot of the grieving went on after the scan before dd was born. Still there are times when I remember all over again. What you've been through is far harder.

It's outrageous that you're still having to pursue a court case 9 years later after what happened. I'm so sorry.

Like this is where feminist rage should be directed. Better systems, more resources. It's appalling that maternity is underfunded, and parents of children with disabilities should have access to the resources they need without having to go through the courts! It's basic.

Sorry for blathering on when I misunderstood what had happened. I really hope your son does well. That comment about waiting for him to die is vile. I hate those people. At least your son is a good person and so are you. You have a good case, you will get through it. I'm sorry we're doing so badly as a society. You and your son deserve better.

My DS is 28. He is severely disabled, has CP and also autistic. The brain damage almost certainly caused by avoidable fuck ups ( though less clear cut than your own).

It's hard not to compare, especially at milestone stages but I got there. Partly throuh the joy he brought/ brings, partly through an amazing school placement, mostly through time moving on I expect and realising this is our normal.

I' ll tell you what though. Every bit of progress he makes is amazing. My DD ( his wee sister) recently graduated with a First. I am so proud of her of course. But the way I felt when he drank from a cup himself ( at school on an open day). I can't describe it even now.

Thank you xxxx.

Guilt is what gets us even when there's nothing to feel guilty about.

What I want to do is change the system. It's so wrong that families are failed like this. I want to go into teaching sessions and just tell student midwives to listen to what the mother is saying. To think rule out 'worst case' scenario before settling on a more mundane reason. Employ more midwives. Train them better. Every Baby Counts is a good start, but it's only a start. It's so overwhelmingly sad that babies are still being damaged needlessly and the same mistakes are made over and over again. So depressing.

I have just started with a volunteering organisation helping families like mine, so maybe it's the start of the healing process.

I have felt similar and it is hard. My son is 33 and I work with someone who was in school with him.
I can't get my head around it sometimes.

I don't know either.
I don't think you did anything wrong. I honestly don't. I also know that feeling guilty even when logically it isn't your fault is completely normal, and it's often a survival tactic. Like, "If I'd insisted she looked at me, he would have been okay" is, weirdly, an easier world to live in than "One woman's incompetence has fucked over my child forever and there's nothing I could have done to stop it." Because that world is terrible. Especially when you have a vulnerable child to get through it.
The court case sounds unbearable. That would send most people over the edge on its own. What an awful thing to hear.

OP could you maybe get this moved to the special needs boards? I’m worried that Chat will bring out well meaning but completely inexperienced posters who have no clue what they’re on about.

From what you’ve described your reaction to this news is entirely healthy and appropriate. But if it’s the case that you’re getting ‘stuck’ in these feelings, if you’re having intrusive thoughts, or nightmares or physical feelings of sickness etc then it might be worth speaking to your GP about PTSD. PTSD wouldn’t be at all surprising given the severity of the blow you’ve been dealt.

I am so sorry you are going through this. It is completely normal to feel how you are feeling. Our first child was stillborn and it probably could have been prevented if several midwives had taken my concerns more seriously. We never pursued this because it wouldn't have brought our child back but it's different in your case.
It is likely in time with the right support what happened will become easier to live with. Not accept but it becomes part of your life. We have severely disabled child now teenager from a subsequent pregnancy, probably not caused by anything, so not the same as in your case, but again something that has become part of our lives.

I'm sorry your family went through this and are continuing to have to fight for what should be automatically given to you.
You have been robbed/cheated out of what should have been much much better quality of life for your son and yourselves you need to be able to grieve this loss and maybe the report while delivering unexpected news is allowing you an outlet for your sadness, loss and anger which wasn't there before and meant you bottled your feelings away as they weren't "valid" at the time.

Thank you all for the lovely replies. Just hearing other perspectives has made me feel better, but I will self refer for some counselling. I think I have been having to be upbeat for so long for everyone else, I've forgotten about caring for my own feelings. Yesterday I looked at other kids playing and didn't feel sad or angry, so that has to be a good thing. I can't change what happened but I can try to change how it is affecting me

You sound lovely, OP. I bet you're a wonderful mother.
The more I think about this, the more healthy I think you're feelings are. You have a severely disabled child, who is getting worse, and could be helped by expensive equipment which is being denied you because the people who should give you the money are fucking around for literally years 'waiting for him to die'. And to top it all off, you've been told that he's only like this because some incompetent didn't listen to your entirely valid concerns.
In the nicest possible way, OP, this is not the time to be beating yourself up because you can't find a happy acceptance. It is the time for wailing, howling, gnashing your teeth, smashing plates and calling a fucker a fucker. Then pouring a gin and crying onto your partner's shoulder.
By all means be strong for your child. But allow yourself to grieve too.

CheerfulMuddler. I think you are right there. I've never properly grieved and got angry at the injustice of it all. I think I'm afraid of getting angry and never getting out of it, but I think some counselling where I can let out this anger following the revelations from the expert midwife report, is what I need. I've not explored that yet with anyone, I guess I'm still in shock at how easy it was to avoid and how just 10 minutes would have given me and our child a 'normal' life.

I'm going to do my best to put the court case on the back burner. It will drag on for years still, so pointless thinking about it. I know I've worked endlessly to reduce the effects of the birth injury, so all the recent deterioration in DSs physical condition, and 2 major operations, plus countless smaller ones, feels like a failure. So it's a perfect storm of negative events, which will end eventually.

I have a lovely supportive DH and 2 gorgeous DSs and brilliant wider family, so I've got more than many in my situation. It's really helped to clarify to put this all down and get it out. Thanks again x