Hypoxic Ischaemic Encephalopathy (HIE)

[charleypops]

Does anyone here have any experience of this? I'm having a bit of a wobble....

[LipstickMum]

Oh Charley What's happening>..?

[charleypops]

I'm so upset. Shouldn't have done it but looked up what Pod had in hospital on the internet. Can't talk to dp - he'd freak. Want someone to tell me everything's going to be ok.

[LipstickMum]

Ah, I see. No-one has told you if there are any possible long-term effects..?

God, what a worry, I wont look it up, I'll be worrying too. I might ask dp.

How is Arlo doing in general?

[charleypops]

I'll be worrying for years - there's no accurate prognosis. He seems great, and to me appears normal, but I have no idea what 3 week old babies are supposed to be like. Thought I was ready and strong enough to find out more about his seizures, obviously not. Think I let myself get too tired today which doesn't help.

[sparklymieow]

Hypoxic Ischaemic I reconise as this is how the medical team descibe DS' brain damage, which has lead to Cerebral Palsy, but I am not sure what the other part is, sorry.

[LipstickMum]

Yes, I suppose he will have more tests as he grows up to see what, if any, lasting damage there was.
Worrying is part and parcel of being a parent I'm afraid, over the really trivial to the really serious.

One things for sure; you'll get all the support you need from here.

Enjoy him, and enjoy the fact that you see him as 'normal', take each day as it comes. He's a very special boy

Try to take as many naps as you can when Arlo sleeps (even I, maniac cleaner extraordinaire have just abandoned everything to sleep during the day), don't get too tired. It's ok to feel upset and emotional about what you've read, don't feel bad that you're not some tough nut.

Give Arlo a big kiss from me and Mille sends a big kiss too, she can't wait to meet him one day

[charleypops]

Hi Sparkly,

Yes, this can lead to cp. Did your ds have the seizures after he was born? How old was he when diagnosed?

[charleypops]

Thanks Lippy

[sparklymieow]

He had a fit when he was 4 weeks old, but the hospital think he choked on some milk, but he hasn't had any other fits, Ds's cerebral palsy doesn't 'fit' the normal CP look on the scans.

[sparklymieow]

he was 2 1/2 yrs old when they dignosed him with cerebral palsy

[morocco]

being a parent seems a one way ticket to stress city sometimes
I'm sorry you've got all this worry and stress about your little baby. Do try not to let stuff youread on the net get you down - I don't want to sound patronising as I've been there, done that, but you know what I mean. I know I should avoid researching some stuff on the net but it's like a scab, you just can't help yourself.hugs to you all

[charleypops]

That must've been tough Sparkly. Ds had quite a lot of short fits (nothing like choking though) within the first 6 to 36 hours which is classic for HIE apparently, but there are quite a few different manifestations from what I've read I think. There's plenty of clinical/medical information on the net about HIE, but a lack of signs of damage to look out for in the baby. I just feel like I need to be prepared.


morocco - good analogy!

[sparklymieow]

I didn't know that DS had anything wrong with him till he got to about 7 months, when he couldn't sit up, he started walking at 18 months and we had to postion his left leg for him and he stumbled about. He was dignosed at 2 1/2 yrs, after 2 years of back and fro to the hospital. His damage is Hypoxic Ischaemic, which I think means happened inside me,
Unforturely with CP it is a wait and see game, noone will predict anything with a child with CP because there is many forms and no child is the same.

[hub2dee]

Hi cp. Sorry to see you back hear with a worried post, but I hope you get the info you need.

Did you get the name of a pediatrician at the hossie ? Could you try and log a request for a call through tomorrow maybe so you can speak to someone who might know more about this, or even about your delivery particularly ?

Might a decent MW / HV coming to you have a good idea about where to start ?

XXX

[charleypops]

Well, it's still early days for us and it's going to be a long wait. Most of the time I'm just enjoying him but I have to catch myself daydreaming about him going to uni or becoming a musician like his dad. I've just got to accept that some of the time I'll be sick with worry about him and dreading every developmental check-up.

Hi Hub - like Sparkly says, no one is able to give me the info I need, it's a waiting game. They just don't know. I went through a bit of this at the hospital, and begged the consultants for some kind of prognosis. I daren't even think about questioning the management of my labour and delivery until I know whether ds has suffered as a result of it. I just felt a bit desperate tonight. I want to ask all kinds of questions about what signs to look out for - should he be sticking his tongue out like that? should he be moving his arms about like that? should he be this quiet? etc etc but it's such a difficult thing to ask people who've been through similar things for information from and I might come across as being selfish.

Suppose I'd better go and try to get some sleep.

[Jimjams]

I assume you need to lok for milestones- things like ability to track, one sided weakness etc. A friends ds had a stroke in utero and he's had regular checks. They think he may have been affected as he is reaching with his left hand and his twin is right handed- apparently they should be the same. He was year old a few months ago.

Many sympathies though- I am waiting to see if ds3 is autistic (don't think he is but I'll know within the next 6 months). Most of the time I'm fine, but then he doesn something and I go cold and shivery and want to throw up. The only thing to do is not think about it. It's out of your control and thinking about it makes the babyhood a miserable time.

[sparklymieow]

CP I don't think you are selfish at all, I haven't been through the exact same thing, but I know what you mean about the daydreaming tho. BUT I will tell you something, Ds is in mainstream school in yr 2 atm, he has just done his SATS and he got two 2's, one 2a and two 3's, his reading age is 2 years above his actual age and so is his spelling (he is 7.6 now) so don't let the chance of CP make you think that your DS won't achieve nothing. DS is one of the brightest children in his class and he says he will go to college, uni, and get a hugely paid job

[charleypops]

LOL Sparkly - what a star! I hope he continues to do so well so he can keep you in a manner to which you'd like to become accustomed in your old age! I have always known I could cope very well with my child having a physical disability, but not sure what I'd do if it turned out he had anything else.

Jimjams - it's a nightmare isn't it? I have waves of feeling like I've been punched in the stomach and totally helpless. Unfortunately I have to agree that the only thing to do is to not think about it. I'm really going to try to not let it stop me enjoying his babyhood. Hope your ds is given the all clear soon. My brother has Asperger's so that's a bit of an additional worry - but I'll think myself very lucky if that's all ds has.

I'm definitely off to bed now. I'll bump tomorrow.
Thanks for posting

[sparklymieow]

He has to continue to do well, he promised his dad a Porshe when he makes his first million!! Of course I am very proud of him because he had a tough start, he didn't talk till he was nearly 4, and he needs a wheelchair sometimes to get about, buut he is so happy and doesn't let his disability get in his way, though he does use it as an excuse sometimes ('C pick up the toys' 'but my legs hurts)
Don't panic yet CP, it will be ok, and whatever happens, you can chat to me.

[hub2dee]

Hi cp - must be quick... as am v. tired, but I know you might not be able to get a prognosis, and that, essentially there's nothing you can do but keep an eye on him and (try not to) worry about developmental milestones, but I think you should question the management of your labour as it may be more difficult for you / the hospital to look into it / analyse it / learn from it later IYSWIM.

Sorry, not trying to be bossy or tell you what to do, but when things don't go smoothly because of stuff like shift changes and people unwilling / unable to make decisions, staff / hospital managers need to know so they can attempt to address these problems.

E-mail me whenever / whatever, OK ?

Night.

[hub2dee]

bumping for any relevant experience (will do so over next few days at different times).

[Jimjams]

charleypops - yep it is horrible (ds1 is severly autistic so the chance of ds3 being affected is something like 75 times joe publics- I don't "mind" AS jst don't want severe again). I have ignored it since he was born but in the next 6 months he should start pointing, and playing more- he's 6 months now- If he isn't by 18 months then I'll march him to the docs. Just try and put it to the back of your mind- and keep all baby books shut.

[charleypops]

Didn't get chance to log on yesterday - couldn't sleep Saturday night at all and had friends round yesterday. That'll teach me a lesson - looking on the internet at stuff like that! The staff in SCBU did warn me not to! LOL! It really is mental torture. At least I've lost a geed few pounds of my post-birth weight over the last couple of days I had about 6 hours of (broken) sleep last nighyt though (woohoo)and feel a lot better.

Jimjams - I will be thinking of you and ds and will join you in keeping all the baby books shut (well, I haven't got any actually). I hope you are managing to not get too stressed. I've been going around feeling sick and hardly ate a thing because of the stress. Which makes everything seem a hundred times worse. It's a very vicious circle.

Sparkly - your ds sounds like such a character! it's really great to hear stories like that

Hub - thanks for bumping for me yesterday. There was a lovely woman at the hospital who told me if ever have questions or concerns about my delivery etc to speak to her, so I might just do that. Not sure what her job title is, but that sort of thing is part of what she does.

[sparklymieow]

he is a fun little boy, and all the hospital staff are on first name basic with him, he loves going to Great Ormond street because they have great toys up there.
I hope that everything turns out ok for you, but don't forget whatever happens, your DS is still your fun, beautiful little boy.

[LipstickMum]

Hi Charley, glad to see your're in better spirits today and that you got some sleep!!!

I was also given a bookmark tyoe thing about 'birth after thoughts' or something similar. It may help you to talk about it and ask questions, if you have time that is!!

Love to Arlo xxx