Full of guilt and struggling to enjoy life

[SouthEastLondonMummy]

Hi, my DD2 had seizures at birth, and was diagnosed as having had a stroke following a placental abruption. She was in hospital for 3 weeks and is now 16 weeks old. She does all the things she should be doing: she is very happy and smiley, she chuckles at funny noises, she has good head control etc. However, we have been told that she will have cp, that is left hemiplegia. I'm really worried about the future, as the neurologists cannot predict the outcome (physically or cognitively), and she is on long-term anti-convulsants. Her condition is my fault, as I did not go to hospital quickly enough, after I was felt reassured following a call to a midwife that I was having a show, rather than placental bleeding. Sorry for the waffle, but I'm feeling down.

erm how is that your fault? The midwife reassured you it was OK- sometimes these things are no-one's fault (probably the midwives response was reasonable in 99% of cases- you were very unlucky).

Watching and waiting is awful, been there done that. The only way I really coped with it was to stay away from children the same age (although that can be isolating, but don;t feel guilty if you find that's what you want to do), and not thinking too much about the future. Throw away the baby books. Are you having regular checks anyway? I set myself a few targets "if he ins't doing x by y then I'll refer on- and I told my HV those targets as well", then having made the targets I stopped tracking progress up to them. Just kept the target- rather than the route there in mind.

I I have a friend who was in the same position- a baby with a stroke at or before birth. He's now 3, and although he has weakness to one side it is very mild. He has an identical twin brother and I can't tell them apart even when they're running around.

I just wish to much I had rushed into hospital at the first sign of any bleeding. Then she would most likely be fine. We know from an MRI scan.

Feel I have become a member of a club I knew nothing about (and didn't much want to, sorry to say). Is there light at the end of the tunnel? Gess, what condition does your child have? Thanks for the reassuring story about your friend.

Sometimes I think if my DD2 ends up with just a weak hand and normal cognitive functioning I'll regret not enjoying this time with her.

ds1 is severely autistic (we think environmentally triggered- so I could have beaten myself up guilt wise over that as well- if only.... I hadn't given hium gluten/thimerosal containing jab/8 courses of antibiotics- probably al played a role).

I think one way I dealt with the guilt was try and work out what had happened to him, so then the next 2 times I kind of did my best to beat fate and make sure history didn;t repeat itself. Of course you can never do that completely, but I think I felt like I was taking control back over wrong decisions that I had made with ds1. made in good faith, but with hindsight there are about 10 decisions I would make differently!

The watching and waiting came with ds2 and ds3. Both are boys, both about 100 times more likely that Jo PUblic to be autistic0 if I remember socci's figures is something like 1 in 30 something. So quite a high chance. a higher risk of another related disorder. The thing with autism though is that you really can't tell until well into the 2nd year at the earliest, although there are various hints that show up earlier- so lots of over paranoid watching possible. DS2 is now 5, and ds3 2, and both are fine- I think we had a close shave with ds3 though.

Much sympathy it is hard- and I did kind of miss out on ds2 and ds3's babyhoods- I never threw myself into them as I did with ds1, as I was too scared of it all being taken away from me.Definitely for me having a few guidelines (the big one was 'pointing by 18 months') meant that I didn't focus on every small thing. I did find being around children the same age turned me basket case though so I avoided them!

HI,

I think we've all get thrown into a club that we never wanted to join, but we're here and it really does get easier with time.

my son is 18 months old. He had seizures since 5 months old and has Williams syndrome. Even though Im assured that this would have occured at conception I often think that im to blame in some way. I think weve all been there with the whole guilt thing.It really was not your fault.

It sounds like your dd is doing dd as is doing everything that she should be. of course, your concerned about the future that completely normal and the professionals wont predict futures and often kids exceed all hese predications anyway.

Just enjoy her, i understand that worry can get in the way of that but this is such precious time.

and I can totally relate to Gess with avioding kids of the same age, thats my coping mechanism.

It's funny you should say that you wanted to make things better the next times round, because I am eager to have a third child now so that I can do things right next time. I though it might mean something good had come out of what has happened to DD2. Though not sure that makes any sense!

I've suffered immense guilt over certain issues with my completely "normal' DD1 too, so I realise guilt is always part of the picture when you're a mum.

From reading other message boards there seems to be some link between hemiplegia and autism as well, so I'm also on the look-out for early signs of that.

We are having regular check ups at a child development clinic and we're back and forth to the hospital, but it seems they can only confirm things that we can see for ourselves by observing, not give us any grounds for optimism for the future.

And thanks LouRobert, XP.

It really is not your fault, but I do know that feeling of guilt... It has lessoned slightly for me as ds2 has progressed & in many ways done better than expected.
He was born at 28 weeks, but i hadn't felt movements (or very few) for a few days, by the time I went to the hospital for monitoring (thanks to our very thorough GP), his heart beat was barely detectable dropping to undetectable & he was delivered immediately. I went through a long period of wondering if I'd gone sooner would things be different, but for me this was something I had to go through.
If you have any unanswered questions, don't let them niggle away at you, ask the hospital. No question is a silly question.
I, like gess stopped going to groups with other children as the differences were so obvious from birth.
I did going to or local SN baby/preschool group very helpful, your HV should be able to advise you.
Your dd does sound like she is doing very well & like you say doing everything she should be at such a young age is a good sign

Oh god I remember the guilt!! Even though we have no reason to feel guilty we still do. My DD2 has a genetic condition, completely spontaneous occurring at conception yet I still have moments when I feel guilty ("I made her this way").

I also had an abruption at 34 weeks so can sympathise with you there too.

Your DD sounds like she is doing very well! Don't expect much positivity from some doctors, IME they rarely like to predict the future in case they are wrong

Try and enjoy this time, I spent DD2's first year being a nurse not a mummy and looking back I didn't enjoy her enough.

I also avoided all those 'normal' babies and actually got a lot out of special needs baby groups - none of that competitive mum syndrome just sheer delight in what our little ones could do even if it was just holding their head up at 6 months old...

Be kind to yourself and enjoy your girl, these early months go so fast.