To be sad at other people's lives and children

[TheBuffster]

I am so sad. I have lost everything. I had a loving husband and a baby on the way, a secure job and supportive family.
Husband and I made some mistakes during labour and now ds is on the path to having cerebral palsy diagnosed.
My relationship with DH is in tatters. I can't stop thinking about the birth. I resent my friend's with all their pregnancy and happy families. My family are strained because of my depression and ds doesn't sleep.

OP you might have PTSD. Many survivors of traumatic situations have similar. So sorry for the loss of the life you had planned with dad. We all make mistakes and under stress we can panic. Please try to forgive yourself. There might be a time when you adjust and feel love and happiness. Your son can still life a good life and be happy. Many cp sufferers work, marry etc. All the best 💐

@TheBuffster Have they given you an idea of what the CP will look like? I just want to give some hope. I have CP, caused by a problem at my birth, my mum tried to ask for help, but was overridden by midwives. She feels no guilt and I feel no blame. She did her best. That is all anyone can ask of you.

I also hope this makes you feel better, but I have a lovely life, 2 great kids, a gorgeous husband. CP has not held me back.

I know the future may look bleak, but it may turn out ok. Xx

I’m so sorry you’re going through this OP.

Please don’t blame yourself. I’m not a medic and I’m sorry if this is an ignorant question but waiting 48 hours to get induced is perfectly normal isn’t it? This guidance from OUH suggests it is. www.ouh.nhs.uk/maternity/documents/after-your-waters-break.pdf

We were told very firmly waiting over 24 was taking a risk. We'd been told by our hypnobirth trainer that midwives would push for unnecessary intervention so waited. I developed an infection and then induction was over 18 hours so baby was born with an infection.
We didn't really understand the risk properly at the time.

We don't really know what it will look like at the moment. No one tells us anything. He has high tone in his leg and handedness on the opposite side so I suspect hemiplegia or diplegia.

@TheVanguardSix Your post was beautiful, it made me cry.

@TheBuffster It wasn't your fault. Labour is such a lottery.

It sounds like the sleep study is for sleep apnea (which causes pauses in breathing)? Can the doctors give you any advice/help regarding sleep? It is very hard to cope on fractured sleep and would help your MH. Sorry they aren't being very helpful.

Ignore the NCT posts if they aren't helpful. It's hard to read if you are having a tough time.

If there was an infection they should have gone straight to ELCS- blame that decision of theirs not yours to go 48 hours which is well within guidance.

Lots of babies and mums are injured by unnecessary interventions- it’s a lottery either way.

God yeah, those ages and stages type comparisons are rubbish aren't they? Don't worry about those for now. My DS has hemiplegia. He didn't walk till he was 2. We just had to focus on furrowing our own little path.

OP, my heart goes out to you. You weren’t to know that the hypno birther gave you bad advice. You’re entitled to trust that anybody in that position, who’s giving out advice, knows what they’re talking about. It’s not your fault, you did exactly what you believe to be best, based on the information you’d be given. That’s all any of us can do.

It’s early days still, but it sounds like the therapy isn’t going as well as it could. Have you tried giving feedback to the therapist that you feel it’s not helping? They should either explain more about why they’re doing what they are, or change tack. A decent therapist will have more than one approach up their sleeve.

At the moment you don’t know what level of impairment your DS will have, if any, and that’s a scary place to be, but remember that it may be very mild and there are many work arounds.

I remember seeing a documentary about a really inspiring couple with CP, I was so struck with their courage, determination and zest for grabbing life by the horns. It was so inspiring. Also, the woman’s mother was interviewed and she’d obviously been really instrumental in helping her daughter make the absolute best of things ans have the best possible life. I just looked it up and it’s called ‘We won’t drop the baby’. I’d really recommend you watch it if you can find it I think you’ll find it reassuring and inspirational.

Another great resource is ‘The Brain that Changes Itself’ by Norman Doidge. It’s a fantastic account of how the brain can be trained to take on functions usually done by another part. It’s absolutely amazing and may give you some pointers how best to help DS, and hope for the future.

You’ll get there, OP. Keep posting on MN if it helps. You’ll get lots of support and it’ll help you. Your lovely boy can thrive and you can enjoy life again.

TheVanguardSix your post was beautiful.

I'm so sorry this has happened.

As others here have said, you need to stop blaming yourself, and you're justified to stop blaming yourself. You'll never really know how the CP happened; it may have had nothing to do with the infection or the wait.

FWIW, I faced the same situation: waters broke and no sign of labour. I had no idea what to do; how to make the decision on when to get induced. I was just lucky to be in a well-resourced hospital (in US) and to get good advice. You were unlucky, which is nothing to blame yourself for.

(The ob-gyn was a bully who more or less said 'stop asking questions you woolly hippie and get induced already', and if I'd been left alone with him I'd probably have dug my heels in and refused to get induced. It was the midwives who talked me round. It could have gone very differently.)

You faced a big decision with limited information, and perhaps you made the wrong call. Then again, perhaps your waiting had nothing to do with it. Either way, you tried to do what was right.

Please stop beating yourself up. And lots of courage for the future.

Hi OP, I’m so sorry you are going through this. Please get some private counselling if you can, if your therapist isn’t helping. My first daughter was born very poorly, and had life changing and life limiting issues. It took me months and months of grieving for the life I wanted and expected to slowly get used to her. She didn’t live much longer than that but I wish every day that I hadn’t spent her life regretting not acting sooner (there were signs in late pregnancy that something was wrong, and I denied induction). I have friends with children with CP and the spectrum is huge. Your son can and will surprise you in who he becomes.
Btw I hated Welcome to Holland too.

I am sorry OP. I have no words of wisdom other than to say this is absolutely not your fault

@NoIDontWatchLoveIsland

My friends DC has CP. They have done brilliantly, better than anyone expected when they were a baby. Turns out that while they have some physical limitation, they are clearly quite academic/bright and look likely to thrive at school. They are a beautiful child and very social popular.

I worked with a chap with CP, he was great at his job and had lots of empathy due to having to cope with a disability and people's limited attitude. It's understandable that you're upset but there is a way forward.

Hi @TheBuffster I have spastic diplegia. The outcome of which may not be as bad as you think. I know the condition varies from person to person but it may be ok. It is not your fault.

For the record my 7 year old son thinks it is cute when I try to run (legs flailing everywhere) and he tries to copy what my legs do. He has also sat me down and said he is going to teach me how to walk as obviously grandma and grandad had not done it properly. He is so cute, he just wants to help me. ❤️

@TheBuffster I notice you say that your lo had an infection and untreated jaundice and now has signs of a neurological condition. I wonder if you have looked in to a condition called kernicterus at all?

@TheBuffster

Thanks particularly from those who had similar stories. It does help to hear you're not the only one. NCT groups etc full of nt babies and breaks my heart. Less welcome to Holland more agghh I'm in Afghanistan wearing a bikini. We've asked for a sleep study but been denied because he doesn't stop breathing!? Like how low is that bar set. Lots of health professionals involved, but nothing practical, just offers of nursery nurse to help learn how to play with baby (patronising as hell!) DH is not in a good place, but coping better than me. Was hoping MRI might give answers but sounds like that won't be the case. I know I should feel grateful for the things D's can do, I just get so down at all the NCT benign comments like look who's walking. Hard not to imagine what life would be like if ds was doing all those things.

I had to stop going to baby groups when things really changed for my twins, about 18 months (despite DT2’s medical issues, we didn’t know about the other things earlier, until they both regressed significantly). I couldn’t face it. I then took them to a toddler group at a specialist school and at first that felt even worse. I found a really lovely group for disabled children of all kinds and it was the best place to be - no judgement, lots of older children who were loving life and moving forwards, it was what I really needed to see.

Do what’s right for you. The unfairness of it really burns sometimes and it’s so hard not to compare, especially at baby groups. I went to one where there were a couple of women who would just stare at me and whisper while I ran around trying to keep my twins safe. I just stopped going.

You made what you thought was the right decision based on the info you had been given. Believe me, if the doctors felt it needed to happen then, there wouldn’t have been a debate - I was told “you are going to theatre right now”, no discussion. Yes, the infection risk increases but it’s not inevitable and so many parents choose to wait a bit longer. You don’t know that’s why it happened.

DT2 has periventricular leukomalacia which is probably what they are looking for on the MRI - but you won’t know what caused it. I don’t know what caused his. So many possibilities. There’s a wonderful PVL support group on Facebook - I bet if you joined you would feel so much better. You should see the amazing things these children achieve. And let me tell you, when something is so much harder for our kids, it’s so much mor wonderful when they achieve it. We are on a different path which is definitely steeper and hard to hack through at times but it’s still full of wonderful things. You can do this.

You're in such a tough situation trying to digest all of this. The Bobath Centre is running their baby group online just now. They are CP specialists. Might be worth looking up so you could spend some time with parents in a similar situation and get some additional support from others in the same boat?

Take anyrhing offered

just offers of nursery nurse to help learn how to play with baby (patronising as hell!)

Maybe but could also be a chaNce to say you take over for an hour

You do have to shout loud (calmly) to get help and respite

it’s not your fault xx

Hi OP - I am sorry you are going through this. My daughter who turns three in February has mild to moderate hemiplegia down her right side. It was very hard in the first year as we didn't know how badly she would be affected or what she would be able to do but as she has got older it's become less and less something we worry about. Yes some things are harder for her but she doesn't let it stop her - she rides a scooter, she can draw pictures and she laughs her way through life with a huge cheeky grin.

We had the MRI when she just turned one and we were told she had a bleed on her brain which means basically a small patch of her brain is liquid and it's that bit that stops her being able to move that side of her body as easily. They also told me it probably happened in the first 12 weeks of pregnancy and that realistically nothing about the birth would have made any difference.

What's really hard is that everyone tells you to wait and see and so I can't tell you not to worry as you will BUT you do need to find some support.

Look for conductive education centres - we have had amazing support via group physio style sessions there and I can't thank them enough for all they have done. It's free as charity run it and amazing. It did me so much good to meet parents of other children either with CP or downs to see that everything would be fine no matter what.

If you can afford it also get some private physio sessions and focus on your babies core strength. We did this from 6 months up to 1.5 years and I swear it's made a huge difference. Your core is massively important in hemiplegia as you need to work up that strength and balance.

Finally I have learnt to stop being angry that the nhs don't provide everything she needs or have as much ambition for her as I do - instead I focus that energy on making it happen myself.

Do you have a portage service in your area? Google it, if you do you can most likely self refer. They have been so helpful to us, and I learnt a lot which helped my boys.

Apply for DLA if you haven’t already - hard to get with young babies but if you can prove he has more care needs than typical children of the same age you should be awarded. The Cerebra guide to the form is really helpful. If you get DLA then you can apply to Family Fund for things you need at home, or for vouchers towards a holiday etc.

Does he have an OT? There’s a charity called Cauldwell who offer heavily subsidised equipment packs of sensory equipment etc which may be helpful to you but you need an OT to compete the form.

If you need any adaptations or special equipment at home, request an assessment from social care OT. They recently bought us two specialist beds (over £3k each) and were going to convert our loft too but the head height wasn’t high enough basically.

The charity New Life can koan specialist beds, buggies etc until you can get your own.

There is quite a lot of help out there but it can be a case of hunting for it.

My waters broke on Thursday, they induced me on Sunday. It is not your fault xx

Oh OP, I’m so sorry this has happened. With my DC my waters broke and like you nothing happened, I too had done a hypnobirthing course and was very suspicious about all the interventions the midwives and doctors would force on me... as it was the situation was taken out of my hands and I ended up with an unplanned section, but by this point it was about 50 hours after my waters had broken, I tell you this so you know you are not alone, you made the same decisions that many ladies take every single day.

I teach a little boy with cp. If you hadn't been told you would never know.
Forgive yourself and focus your energy on best possible advocate for your child.