Worried birth trauma caused SEN

[Millie2008]

My little boy is now nearly 5. He is autistic and has significant learning difficulties to the extent he needs to go to a special school.

The birth was fairly traumatic for different reasons. A long pushing stage which resulted in an emergency c-section.

When he was delivered there was a bit of a gap before he cried- I think they gave him some oxygen through a mask but not intubated or anything. Then they let me say hello before whisking him off to NICU. I found out this was because he had low oxygen in his umbilical cord blood gasses. He needed "tests" to see if there had been any brain damage.

I was put on the post-natal ward and awaited the results. The paediatric consultant came to speak to us a few hours later. He told us they'd conducted "tests" and had no concerns. If my memory serves me correctly they kept him on the NICU for a further 12 hours or so for monitoring.

I feel really stupid- I guess in my post birth haze and exhaustion (plus I had an infection) - I didn't ask what the "tests" were. I was just so relieved to hear they weren't worried. Does anyone know what these tests would have been? I've tried google but not getting anywhere. In retrospect I've realise they were checking for hypoxia to see if he needed treatment.

My biggest stress, and it's eating me up and causing me to be consumed with guilt - is whether he suffered from some mild hypoxia as indicated by the low oxygen in the umbilical cord blood gasses. And that because it was mild no treatment was indicated hence being discharged from NICU and given the "all clear" by the consultant. Would they have bothered telling me if it was only "mild" hypoxia and didn't need treatment?

So my worry is that if he did suffer mild hypoxia this has caused his learning difficulties. And if this IS the case, it's my fault. Because I really didn't want a c-section so asked for some more pushing time. The obstetrician reassured me afterwards that as the medical professional she made the decision that it was safe to carry on pushing for another 30 mins- and then when she said she wasn't happy with baby's heartbeat we went ahead with a c-section. But I still can't help thinking that if I'd gone ahead with a c-section 30 mins earlier their wouldn't have been low oxygen in the cord blood gasses and therefore no risk of hypoxia -- and no additional needs.

I love my little boy to bits and feel that I'd be completely accepting of his differences if it weren't for the fact I'm so worried I've caused them. There's no question that his life is going to be more challenging because of his additional needs and I can't stand the fact that this might be my fault.

Even if it was your fault op (I really don't think it is) then there's nothing you can do and there's no point letting the guilt eat you up.

Yes your son has learning difficulties however he is alive and thriving and that's all down to you, times have changed and people with disabilities have more opportunities and things are more accessible so although it may be a bit more challenging, it'll more than likely be fine.

Be kind to yourself, you can't change anything and there's no way of knowing if what ifs would have made a difference so please don't dwell on it, easier said than done I know but maybe some counselling will help you with these feelings

I’m sorry I don’t know the answers to your medical questions, but just wanted to say please be gentle with yourself and try to forgive yourself. Repeat repeat repeat what your obstetrician said to you until it sinks in. No one on earth would hold you accountable.

I'm sorry, I don't know the answer to the medical questions. It sounds like you are struggling, maybe some counselling would help.

Whatever the answer to the question, you did what you felt was right at the time and can't blame yourself.

My brother is 32 and severely autistic and he was born with deprived oxygen. My mum still believes it was the cause all these years later

My son is autistic and for a long time I wondered whether it was because of stress due to his father screaming at me during the pregnancy (he was abusive but that's a different thread). He didn't feed well and didn't gain much weight. I went through heroic efforts to get my milk in because I didn't want to stop breast feeding. It worked but I wondered whether the autism was because he didn't get enough food in the early days - which of course I thought was my fault. He is now 14, lovely, and exactly like my mother. So now I think it is genetic and I'm very much at peace with it. My point is though that we as mothers blame ourselves for everything. It reflects the love you have for your child, but truly, it was absolutely not your fault. I can't speak to the medical situation, but even if that was the cause, it would be the doctor's fault - you were under a consultant's care, it was the consultant's call. You couldn't possibly have made a considered medical decision and no one would have expected you to. Please stop beating yourself up about this. I hope it gets better with time for you, like it did for me.

My mum had a difficult birth with me, 9.5lb, long pushing stage and I was well and truly stuck (shoulder dystocia from what she’s described). I’m not autistic.

My DD was a speedy induced labour at 37 weeks, followed by a loooong pushing stage of I think 3 hours, forceps, prolonged jaundice, a very unhappy baby who took ages to learn to feed. She isn’t autistic.

My niece was born at home in a birthing pool, textbook labour, healthy weight. She has ASD.

You can’t blame yourself, if my daughter had SEN I would probably be asking myself whether an ELCS would have been better than the forceps etc. As mums we question everything we do and wonder whether any difficulties our kids face could’ve been avoided had we done things differently. Please be kind to yourself 💐

There are lots of “ifs” in your message, OP - “if” he did have mild hypoxia (which no one told you was the case), “if” that caused his learning difficulties (which no one could prove categorically anyway, I don’t think). The facts are that your son was tested after birth to see if low oxygen levels may have caused him harm, and the outcome of those tests was that a consultant told you they had no concerns. So no, I don’t think your son’s learning difficulties were caused by the birth. If you had chosen to have a c section much earlier it is likely that you would be feeling guilty now and blaming a lack of natural birth for your son’s SEN. Women have it absolutely drilled into them that a natural birth is the best and safest thing for a child AND that medical intervention is routinely pushed too early and harmfully. You were trying your very best to do what was right for your son, and you have not hurt him. I know it’s hard but I hope you can try not to let this consume you - it doesn’t have to.

I this isnt a good train of thought op. The medical professionals led your birth and chose what care to give your baby when he was born. As PP says, if things had followed a different path you would be wondering if these different decisions had caused it.

Your son is your son, as he is. Everything he has experienced before and since his birth has impacted on him to some degree. You can't change that or anything you did or didn't do. What if is rarely a helpful phrase.
Love him as the unique and perfect individual that he is. Be proud of his achievements and know yet a person with learning disability can offer far more to the worldvyhan they will ever receive. Their path won't always be easy, but then nor are lots of other people's.

Whatever the cause, its not something that you should even give head space to. Your focus had to be the same as any other parent - to raise him to be the very best he can be.

Hello,

I’m so sorry you are carrying this guilt. My child has significant SEN after a perfect birth. I spent years running through what I did in pregnancy, how much I spoke to them as a baby, did I take them to hospital quickly enough when I thought they had bronchiolitis. I was certain that this was in some way my fault as a result of my action or inaction.

The reality is, for both of us, likely to be that some children are born with learning disabilities and your child is one of them. It’s a natural occurrence in mankind, and has happened since humans have been humans. Children can be disabled from conception, or become disabled pregnancy, during birth and in life.

I think the cord blood can be put into a machine which says what it’s oxygen levels are and thus if the baby is likely to suffer brain damage as a result of lack of oxygen, I think I got this from Adam Kaye’s book This is Going to Hurt.

Every time you go to that place of blame in your mind, tell yourself that didn’t do anything without your child’s best interests at heart, you followed doctors advice, it was a natural occurrence, that happens every day, all over the world. Focus on who your child is now, and how you can help them make the most of their life whilst bringing as much joy to your own.

sending love xx

Thank you so much for everyone's kind and empathic worlds, it's actually made me feel quite emotional.

I probably could do with some counselling- but don't feel I have the time atm! I have another little one too.

@User89174648495 - thank you for your message. In terms of the "tests"- I'm referring to the ones they did on my baby son once they'd found he had low oxygen in the umbilical blood gasses. We had to wait around 4 hours whilst they carried these out up on the NICU and couldn't see him until they'd finished. I'm assuming they were tests to measure brain function but I can't imagine why on earth I didn't think to ask at the time 🤦‍♀️

If you Google ‘how you diagnose HIE’ this will tell you the tests they likely did.
ASD isn’t thought to be caused by a birth insult though, I think it’s generally thought to be inherited from family.

I’m so sorry you’re carrying this guilt and the worrying of what if.

I was in a similar position a few months ago my ds2 is Autistic and has now been diagnosed with cerebral palsy. I spent so long wondering if it was my fault and what if I’d just done one small thing differently. Recently his paediatrician and I spoke she said that although it’s likely his CP at least was caused by an oxygen issue pre birth (he stopped growing and I was induced as my placenta was failing) but I’ll never be able to pinpoint when it happened so I should forgive myself and be kind to myself. It was quite hard to hear but she was right.

counselling could help op ❤️

Ok, so my son has SEN. We also has an extraordinarily stressful pregnancy and his birth was traumatic for several reasons and we had an extended stay in hospital after because they were worried about him.

Fast forward a decade to his actual hard won SEN diagnosis and I looked at the doctor, she looked at me and said “look, nothing you have or haven’t down during your pregnancy, birth or the last ten years of raising him has made him this way, he is just this way”.

I could and have spent years questioning myself and beating myself up. The fact is I’ve got an incredible boy who is just different to everyone in his class, and he will triumph in his own ways.

We are friends with a local organisation called L’Arche and they’re up and down the UK and around the world. They’ve helped him see people like himself and through that he’s gained so much confidence and he’s growing and thriving. Worth a look maybe.

First off, it's not your fault. Secondly whilst not nearly as traumatic I had a similar experience 4 months ago. I was attempting VBAC (having signed a consent form for c-section on arrival). During pushing stage baby's heart rate dropped to below 40bpm so they whisked him out via ecs. After the birth I was told that they tested the blood gas exchange (gave me the actual figure), that he was hypoxic (but quickly recovered) and that he needed to be resuscitated using peeps (the face mask thing to get him to start breathing- positive end expiratory pressure so Google tells me - there's a video of it being performed on a dummy on YouTube if like me you wanted to see what they actually do). Given how much they told me (without my asking, although I did ask for further info when they came to explain it the second time/they understood that it might not sink in so explained it the day of the birth & the next day) I think that they would have told you if your baby was hypoxic. Also, my baby was hypoxic and there was no delay at all in getting him out. I had already signed the consent form and when baby got into trouble they didn't ask me if I agreed or tell my husband what was happening, just hit the alarm and whisked me off, and he was born 18 minutes after I arrived in theatre. Baby can be hypoxic even if there is no delay at all. It's not your fault. You can probably request your medical records if you feel that it would help you understand/process what happened. I requested mine for my previous birth when I was trying to decide whether to VBAC or elective c-section (depending on why I needed a c-section previously might have made it more likely that I'd need one again hence I wanted my records). I can't say that I feel like I know any more having seen my medical records personally but you might find it helpful to see yours rather than rely on memories from an exhausting and traumatic time. It's absolutely not your fault xx

It's not your fault. These are the reasons I blame myself for my little boy being autistic and needing a specialist school:

1. I had IVF. I was never meant to have kids.
2. I had a nervous breakdown at the start of my pregnancy and had to take medication. I tried to take my own life.
3. He was breech, why couldn't I carry him properly?
4. He was born quite small, why couldn't I grow him properly?
5. I didn't talk to him enough
6. I didn't play with him enough
7. I had to work from home in the pandemic and didn't pay him enough attention
8. He hasn't made good progress so far because I'm not a good enough mother
9. He doesn't speak because I haven't tried hard enough

10. That's it for now, but I'm sure more will come...

The amount of self hate I have for myself eats away at me. Please don't be like me. It doesn't make for a happy life.

@Missmagpie1 thanks I've googled and it's provided some info I've found helpful

@Scoundrella - sorry you've gone through similar. Great that the paediatrician could provide a bit of reassurance. My son is under paeds and it's given me the idea to make an appointment with them to discuss this.

@HPD76 thanks for your message. It sounds like you've found a really positive way of making sense of it all. And great that the dr was able to provide that reassurance. I've looked up L'arche and it looks like there's an organisation in my area- so I've joined the local fb group. Thanks for the recommendation 😊

@thejadefish thank you so much for sharing your very similar birth experience. From what I understand- the blood has part (that they test in theatre) gives them an indication of whether they need to carry out further tests on the baby. This is why they whisked my son off to NICU - to conduct further tests to see if there was any hypoxia and whether it needed treatment. Did they carry out further tests on your baby after testing the blood gasses? Sorry hope you don't me asking

@babysharksb1tch aww I'm so sorry you're going through this torture too. It's so awful isn't it. It's easy for me to look at your post and say that rationally none of those things make it your fault. But I understand the strength of these convictions and it's so hard. I hope you find some peace. How old is your little boy?

@thejadefish sorry *blood gas part

Hi OP, you've already had great advice on the thread above. I thought I'd chime in to also reassure you that yous DS is still so young, there can be a lot of improvements with SEN that can come with age.

My neighbour was told (30 years ago) when both her young sons started nursery, that they had severe learning difficulties, would likely never live independently, etc.

They attended secondary school just as the internet became a thing and both got significant IT support in their secondary school subjects. They are both now living completely normal lives, in relationships, one running his own construction business and the other about complete an Engineering postgrad degree!

So there's every chance that what seem like significant LDs now, might really improve with time. Wish you and your DS all the best. xx

Not read all the replies but my ds is 4 and I had a lovely pregnancy a “perfect birth” although I did have a long labour. He weight 8lbs 6.
He has a diagnosis of asd, I knew around 18 months of age and he was diagnosed just before his 4th birthday. He will be attending a specialist school. He’s completely non verbal (( however he can spell, read and do math. Sorry have to brag about what he can do because I get fed up of talking about what he can not do)) I genuinely believe my ds was born with autism. With hindsight there were “sign’s” before he was even a year old.
Please don’t upset yourself or blame yourself it definitely isn’t your fault or anyone else’s.
Dealing with autism and everything that comes along with it can be hard enough without beating yourself up. 💐

@Millie2008 I don't mind at all ask away. I was fortunate in that he didn't need any further tests as he recovered quickly after being resuscitated (they didn't mention any other tests so far as I can remember anyway). He wasn't admitted to NICU and was with me when I came round from the general anaesthetic. His agpar at birth was 2 which is pretty low. I asked if there would be any long term damage and they said that they thought not but couldn't know for sure. He seems normal though despite the difficult start. I really don't think that there is anything that you could have done to change the outcome x