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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

do you ever feel guilty about the past

39 replies

2shoes · 23/09/2007 11:37

cos I do. I left dd in hospital when she was born. and didn't go back until she was 2 days old. (she was out of it doped up and would be touched)
then when she had her first big fit I left the room when they took her catheter out.(ok I was sick covered)
but for some reason I still feel guilt.
anyone else?

OP posts:

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needmorecoffee · 25/09/2007 21:01

What do people do when the guilt gets too much? When your heart hurts inside?
I really struggle during those times and feel like its all too much to bear.

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BigBeeristheBigBeer · 25/09/2007 22:26

Sidge, how many weeks were you when you had the abruption?

I had a bad fall at 36 weeks and an abruption at 41 weeks. Have always wondered if my fall caused it.

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BigBeeristheBigBeer · 25/09/2007 22:36

NMC, when I feel really guilty about the past my head just starts spinning.

I read a book on Guilt recently (!) and it said that feeling guilty was pointless, it just made any situation even worse than it was already. Instead people should feel "constructive regret". The book wasn't too useful, IMO, but that was the message.

I try and find positives in the situation when things get bad. The biggy being that for people posting about their DC on SN, however bad things are, their kids are alive and in the world.

And I also think to myself that however much I might be failing my kids sometimes, if I give in to despairing feelings then surely I'm failing them even more.

I want them to be happy, so I'm trying to be a happy mummy.

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BigBeeristheBigBeer · 25/09/2007 22:38

"And I also think to myself that however much I might be failing my kids sometimes, if I give in to despairing feelings then surely I'm failing them even more."

Of course this leaves me wide open to feeling yet more guilt if I can't manage it

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2shoes · 25/09/2007 22:46

needmorecoffee I know what you mean about C.E my freind has been abroad to do it and sent her dd to a C.E school. but tbh she hasn't started walking or sitting up. It is VERY hard work and can overshadow other needs.
so don't feel guilty about not doing that please.

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Sidge · 26/09/2007 10:23

BigBeer - I fell at 34 weeks (a Thursday) and had DD2 on the Tuesday (34+5) by crash section. They said I had a clot behind my placenta, which may have been a contributory factor to the abruption.

I am convinced my fall caused the clot (hence the guilt - I was stupidly standing on a low sill to clean the cobwebs away under the curtian pelmet; bloody nesting!!) but the obstetrician said it may have been coincidental. I think she said that just to make me feel better though.

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BigBeeristheBigBeer · 26/09/2007 12:42

I had a clot behind the placenta too.

I wish I'd gone and got checked out after my fall. But I assumed the baby was well protected by amniotic fluid and couldn't be any worse off than me.

I told my consultant that it was all my fault it happened and he said people always say that and they're never right.

I always assume that everyone else is blameless but I am totally responsible for DD2's condition.

But EVERYONE nests and decorates and balances a bit precariously on a chair or ladder or windowsill in late pregnancy. Seriously, if your fall caused the abruption then it was just really bad luck, nothing else.

I fell over on DD1's stupid roundabout toy.

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Sidge · 26/09/2007 14:46

I got checked out, BigBeer, and everything seemed fine. I guess sometimes these things just happen, you're right. If I hadn't been cleaning bloody cobwebs up (MIL was coming to look after DD1 over half term for us, I thought I'd better clean up!) I wonder if I would still have had the abruption.

Sigh, I probably would, but I think we never stop beating ourselves up do we?

As the neonatal consultant said, sometimes shit just happens!

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BigBeeristheBigBeer · 26/09/2007 17:06

I got my hopsital notes and they said there was a "retroplacental clot".

Does your DD have CP, Sidge?

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Sidge · 26/09/2007 22:30

No, she has (are you ready for this? LOL):

Probable birth hypoxia causing Hypoxic Ischaemic Encephalopathy. (brain damage to you and me!)

Prader-Willi Syndrome (a genetic disorder, undiagnosed before birth)

She had 2 holes in her heart (now repaired)

And loads of associated stuff like GDD, hypotonia, severe speech delay, feeding problems etc.

But she is lush

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needmorecoffee · 27/09/2007 09:55

How did you know she had Prader-willi syndrome? My dd had a hypoxic event at birth (they say) which has left her with severe CP. But when she developed infantile spasms I asked for more tests to make sure there was nothing genetic going on too (that would cause IS. It is rare. Or would have made her more vunerable to hypoxia) but they refused, saying of course its just CP. Now she started developing lennox-gastaut type epilepsy(again rare and often assoc with genetic disorders) but again they say its all down to her CP.
They think I'm a nag of course but I want to know why some kids can go 20 mins with oxygen and be fine, and some, like dd, a few minutes yet have very severe CP plus IS and epilepsy.

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Sidge · 27/09/2007 12:35

Hello, nmc - they started doing genetic testing after a week or so, as her clinical presentation didn't fit well with her birth experience. She was profoundly hypotonic, so much so they thought she had a muscular dystrophy of some sort. Muscle biopsies were normal so they got every specialist under the sun to see her. A brilliant neurologist saw her, saw she had dysmorphic features and suggested testing for PWS and bingo. We had the bloods taken at 2 weeks old and got the results at 4 weeks.

She also had seizures at birth and has had intermittent nocturnal seizures since then, which seems to be not uncommon in many genetic disorders. Can you ask for a referral to genetics? If the paeds won't do it ask your GP.

PS Sorry 2shoes for the hijack of your post.

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BigBeeristheBigBeer · 27/09/2007 15:18

I bet your DD is fab, Sidge

Apologies to 2shoes also

NMC, how is your DD doing now she's home?

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maggiems · 27/09/2007 17:44

Anniebear yours arent silly. I feel guilty for wanting my Dt's to be born before 30th June (cut off date in NI) so that they could go to school early like me. I didnt have the wit to realise at the time that Dh struggled in primary school because he was also a June birthday. I didnt have the option in the end as I was brought in early. However I had made the choice of having them before 30th June. For some reason I still feel guilty, knowing that had i had a choice I would have made the wrong one as Dt2 is really not ready for P3