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Anyone any experience of Hypoxic-Ischemic Encephalopathy Grade 1?

(30 Posts)
Thandeka Tue 16-Feb-10 16:59:00

My beautiful 9day old baby has this:

Anyhow she is a grade 1 of this which is the best one to be and is alert and feeding and doing all normal baby stuff sucking and grasping reflexes etc. (and she is lovely!)

She had an MRI scan yday which did show evidence of an "event" during her birth (ie. damage) but at this stage they can't tell how the damage will manifest itself. We have a follow up appt. in 6 weeks but it is a case of see how she develops.....

Anyone else had this?

(Basically she was a 9 and a half pounder (I had a tiny bump- we had no idea!) and I physically couldnt push her out ended in failed ventouse, forceps delivery, episiostomy, 2nd degree tear. Oh and my first epidural failed- 2nd worked, and they couldnt get a line in blood everywhere, vomit gas and air didnt work- I basically had everyones nightmare birth and to make it worse it possibly damaged my baby and she also sustained a lung infection during delivery and was on antibiotics through a canula and in neonatal intensive care for 5days after birth.

Anyhow anyone else had a baby with similar and it all been okay? She seems like a lovely normal baby to me- cries, wees, poos, feeds, and I adore her and just want her to be okay.

Thanks

sarah293 Tue 16-Feb-10 17:01:13

Message withdrawn

MABS Tue 16-Feb-10 17:58:19

my ds was a grade 1 alos, echo what Riven says, watch and wait, v hard to tell.take care

Thandeka Tue 16-Feb-10 19:40:14

thankyou both for replying. Riven I have read your story and know about the tough and wonderful times you have with your dd.
Mabs how is your DS?

MABS Thu 18-Feb-10 08:06:44

My ds is 9 now and had left hemiplegic cerebral palsy with incontinence. He is very bright, no academic issues at all, he is at mainstream school. Where are you Thandeka? I am on south coast.

Northernlurker Thu 18-Feb-10 08:15:35

The fact that she is doing everything she should be now is good but the other posters are right, you cannot tell what will happen and others experiences, bad and good are no predictors for you. It muct be very hard - I would just want to know too - because then you can cope and plan but that just isn't possible now.

How are you doing though? This sounds like a very traumatic experience and now with this anxiety on top - do you feel you are coping?

Thandeka Sat 20-Feb-10 17:01:32

We are based in London.

Yup I very much am a control freak planner (you should have seen my wedding- military precision! Makes something like this extra hard for a personality like mine!)

Oh and bub had to be in hospital for 7hours yesterday as she has lost 14% of her birthweight and they wanted to check she wasnt dehydrated- she wasnt but now we have to start a complicated routine of top ups with expressed breast milk and diarolalyte. Its intense!

Community midwives are fab though and we are getting lots of support and I am hopeful she will be fine and anyhow have decided that even if she isnt we are determined to treat her as our normal baby- ie. any problems that come up for her I want them to be just because that's how it is and not because "oh she's a brain damaged baby" - to us she is fine until told otherwise, and even then who knows if whatever condition she develops eg. learning difficulties is as a result of the HIE.

Northernlurker- coping much better now am home but in hospital thought I was going to go insane- you wouldnt believe some of the stories and we have to make some formal complaints- the joys!

Northernlurker Sat 20-Feb-10 20:25:58

I'm sorry hospital was so rough. Do put the complaints in because it will help make things better (I'm an NHS manager). Sometimes it's the only way certain points get made.

Make sure you are eating and drinking properly too. It's hard with a small child at the best of times but a newborn that you have anxiety about - that's a recipe for neglecting yourself and she needs you absolutely firing on all cylinders. I think your attitude is absolutely right. Lots of things happen to our children and we don't know why - we may think we do but it's only very rare that you can be 100%. My dd2 has a congenital heart defect (but is 100% well thank God. I don't know why that is though I could take stabs at it. Ultimately that doesn't go anywhere though. You just play the hand you've been dealt. Congratulations on the arrival of your daughter smile Will you tell us her name?

Thandeka Sun 21-Feb-10 11:03:06

Hospital was weird because there was some phenomenal care and then some horrific care- so we have actually decided to write two
letters- one praise one and one complaint one as if we put them in one letter it becomes an average one and that wasnt my experience- it was either awesome or horrific in equal measure! lucky me!

Daughters name is Elsa Bea - she is so beautiful and obviously I am not biased at all! I adore her and now just trying to get er to gain weight- that is another worry with her - by friday she had lost 14% of baby weight but todays weight she is slowly starting to gain and she was a massive baby originally. Just got to get the boobs pumping on all cylinders so am defo making sure I look after self so i can feed her- being fed and watered and rested well!

Thandeka Fri 26-Mar-10 17:35:00

Am just bumping this on the offchance anyone else has any experiences- DD is now almost 7weeks and doing great, but would quite like support from other mums who have experienced similar.

Got my brith debrief on tuesday- really not looking forward to it- yuk.

Northernlurker Fri 26-Mar-10 17:46:03

Just saw this pop up on active convos and it reminded me I never posted back about her name blush It is so lovely - I have a Beatrice known as Bea - GREAT name grin

Glad she is doing so well and I'm sure mums who know what they're on about will be along in a bit.

About the debrief - I think the best thing to do is write down a few things that you really want to know and just keep referring back to that. If it becomes very emotional just say you need to stop for a minute.

mintyfresh Fri 26-Mar-10 21:32:00

My dd had this - full term following placental abruption. She had seizures 24 hours after birth but had seemed ok even after emergency c section, apgars etc. She had MRI at 2 weeks old which showed basal ganglia damage.

We were told possible CP at 6 months old but now at nearly 3 years she is doing well. She hasn't escaped unscathed but walks and talks although she will most likely never be athletic and certain fine motor tasks are hard for her. She has no cognitive problems whatsoever. We have physio to help and monitor her development.

Sounds like you are coping really well Thandeka, I was certainly not in the same place when dd was 7 weeks old. Hope your debrief goes ok and that your dd continues to do well smile

Thandeka Sun 28-Mar-10 07:56:49

Hi northernlurker- good advice thanks- Am going to take a list with me.

Mintyfresh that is good news about your daughter. I guess the way I am looking at it is if Elsa develops learning difficulties, or CP or anything really we are going to try and view it as that is just who Elsa is rather than that is because she is a brain damaged baby as it just seems easier to deal with that way. So far no signs of anything she is very alert and lovely and has started grinning and cooing at us. (oh and the girl loves her black and white books and I was in the shower when she was 3 weeks old- heard a rustle on the baby monitor- came back to discover she had turned the pages- the kid is a genius- sod the brain damage! In fact her dad is borderline genius and if she inherited that then the brain damage may just make her a normal kid- no bad thing!)

Being a bit flippant but trying to stay positive for madam's sake. Is really good to hear from other mum's in same boat- there is barely anything on the internet about it - have joined a yahoo support group but it seems quite american and "hun" like which I am not a fan of.

jardins Wed 31-Mar-10 19:46:22

Thandeka sorry about the one-handed typing which makes things so much SLOWER......

And breathe.

I just read your post and I simply wanted to say how proud I am of you; yes, I am! Sounds like you are doing GREAT and so is Elsa. (My baroque oboe teacher's name is Elsa and she's fabulous and famous and I love her <goofy emoticon>)

Be good to yourself: this is something I'm getting better at third time round. Elsa seems perfect. Let us know how you get on, ok?

Being a mother is incredible, innit?

badkitty Thu 01-Apr-10 14:31:11

Hi Thandeka, my DS was HIE grade 2, he is (nearly) 16 months, has quad CP but is doing pretty well considering (see pic on my profile!) and is a bright cheerful little chap. However I suspect outcomes for grade 1 HIE are generally less severe. Elsa sounds like she's developing really well and your attitude is so positive it is amazing!

Thandeka Mon 05-Apr-10 12:21:03

Waves at Jardins How is your little one doing?

Badkitty your DS is georgeous- what a happy chappy!

We have her next consultant appt this month so should find out more then. So far no seizures or any untoward signs and she is smiling, cooing and gurgling and starting to hold her head up so reaching all the appropriate milestones for an 8week old. Am hopeful.

Badkitty did you know there are HIE support groups (yahoo groups) available? I have joined a couple and there is even some facebook groups too. Is just nice to chat to people in same boat even when the outcomes are sooooo different for each child.

mintyfresh Mon 05-Apr-10 20:37:59

Hi Thandeka,
I didn't know about the support groups - wish I had when dd was born. I only recently came across MN and up until then hadn't even heard of anyone in the same situation. I really did think we were completely alone!

Glad to hear your dd is doing well - really does sound very positive smile

Thandeka just wanted to send you a hug. Sounds like you have a beautful daughter and I hope your being good to yourself and being well looked after.

Thandeka Tue 06-Apr-10 08:35:14

Mintyfresh- this blog pointed me in the right direction for support groups sophiejourney.blogspot.com/2009/12/search-results-hie-information.html Think it is 6 in 1000 births that end up with HIE so not very common at all thankfully but it also means support is few and far between especially as how the damage will affect each baby is so different.

Thanks tryingtobemarrypoppins2 - yup looking after myself (especially my poor nips which DD has shredded while breastfeeding- she had tongue tie and post snip she has been ravaging my nips with her new improved latch- owie!). Start traumatic birth counselling in a couple of weeks but since the debrief and some long hard convos with DH am a lot happier about it. The trouble with HIE I think is the woman often feels it is her fault because she couldn't get the baby out in time, and there is an incredible amount of guilt associated with that (even if your logical brain knows it wasn't your fault the heart part tells you it was) but am finally genuinely believing it wasn't my fault and that puts me in a much better place to be able to deal with it.

Please don't think it was your fault. I saw a birth counsellor (totally different reason to yourself though) and her method of debriefing was really helpful as you see the birth through the eyes of the doctors/midwife etc and I think I saw my birth totally differently.

Sounds like your DD is feeding like a star! Look after those nips!!

jardins Tue 06-Apr-10 21:35:48

Glad to read your news Thandeka. This will be a short, one-handed post. I understand what you mean about difficult births and guilt; my eldest daughter's birth was most traumatic 14 years ago; forceps, the lot. she's perfect btw. fwiw my second labour was a dream - my body 'performed' just as it should.

I've got another DD this time round named Angélique. She was born 27th Jan, and yes, she's fabulous wink.

Keep posting!

sneezecake Mon 12-Apr-10 08:43:52

hello thandeka, my ds 19mo was born with hie following a silent placenta abruption (at home) I was given a crash C section with a general anaesthetic, so i didn't even see him being born. sad
when I came around from the GA I was told that we were both very lucky to be alive!
however ds needed resusitating and he might not make it past 48 hours. sad sad
at 36 hours old he started fitting and we thought we were going to loose him.
after 3 weeks of sedation, they did an mri, which showed a patchy signal in the basal ganglia. we were told to watch a wait to see if he deveolps his milestones.
he was a 'normal' baby until about 6-7mo when he sarted fitting again. and we got a CP dx.
but having said all this, he is a little star, he talks and his understanding is good, just his physical development is behind. but we see a physio every2 weeks, and she is talking about getting him walking soon, so although we don't think he'll be rock steady on his feet we do think he'll get walking and at least fit in with his peers.
I have some pictures on my profile if you'd like a look.
congratulations on the birth of your little girl.

Thandeka Wed 21-Apr-10 12:14:41

Sneezecake your DS is adorable- I LOVE the sunglasses pic- what a face!

at 19months on from the birth have you recovered mentally from it do you think? and do you think you will have any more? Sorry being nosey just things pre-occupying me at the mo- start counselling soon and wondering when if ever we will have more kids, (I mean I dont want em right now but I defo want more but I can't imagine going through the horror again and so it would be interesting to hear from other ladies further down the line to me IYSWIM?

cloclo76 Wed 21-Apr-10 18:14:25

I had a very similar birth, ds was 8 lb 7. We had to stay a week in hospital, lots of studies, blood tests, even scans on his head. Nighmare experience. He was absolutely fine. He is 19 months now and doing really well. Good luck.

clairekerzner Fri 04-Jun-10 14:37:51

Hi Thandeka- just stumbled across this. I'm Sophie's mum from the blog you linked above. I assume you've read her story there and elsewhere, but just wanted to reiterate how well she's doing. Her original diagnosis was Grade III but doctors can't believe she could have been anything above II based on how well she's gone.

She spent 26 days in hospital before coming home, and did have gross motor and communication delays as well as low tone in her left side and high tone in her right until she was about 8 months old.

But she's 18 months old now and on track in every developmental area. She walks, talks, runs, jumps, and is lovely to be around. She's about to be discharged from all monitoring programs as she really doesn't need them anymore.

I hope your little one is still doing great- no matter how much time goes by, you'll still be thinking about the rough start for quite a while. But you'll also be able to celebrate how well you've all come through it.

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