New here... baby with CP

[badkitty]

My little boy was born in December and suffered hypoxia at birth - spent 3 weeks in SCBU and we were told at the time that he was likely to have some degree of CP. Since coming home he has been doing well generally but I had started to notice that he wasn't moving in the same way as other babies - I brought forward our 6 month hospital check up but the registrar we saw didn't seem frankly to know much about what she was talking about although did refer us to physio at my insistence. Anyway as it was taking ages to get hospital physio appointment and I was getting increasingly concerned we went to see a private paediatric physio today, and he confirmed that in his opinion he does have CP, affecting all four limbs although much worse in arms than legs. Said it was good that we had come in so early so could get therapy started v. young.

So anyway I feel a bit weird now - there have been so many tears since he was born but now our fears have been confirmed (albeit I know not a formal diagnosis) I almost feel relieved that I now know the worst and can focus on what we can do to help him. I am really annoyed at the hands off approach of the hospital given the results of his MRI, I would have thought they would check him more often and get him on physio asap - if it wasn't for me pushing nothing would have happened for another 2 months.

The worst thing is the guilt I feel which will be with me for the rest of my life - I feel it was me who caused it as chose to go for a home birth. My pregnancy was fine and home births are really promoted in our area and I really thought it would be the best way for him to enter the world. We only live 5 mins from the hospital anyway so I thought it would be no problem if we needed to transfer. The labour seemed to go fine as far as I know, according to the midwives attending it was a textbook labour, but the pushing stage did take quite a while and at some point he managed to tangle himself up in the cord and swallow a lot of meconium. So now of course I can't stop wondering if things would have been different had we been in hospital and thinking how stupid I was to have this idealistic image of the perfect natural birth. I feel so isolated from everyone I know as well with their babies - the moment of Harry's birth was just like stepping suddenly into a nightmare, the memory of it haunts me all the time and I can't bear it when I hear other people's birth announcements as it just reminds me of that moment and makes me feel sick thinking about what might have been.

Anyway sorry this has gone on so long, I just wanted to reach out to some people who might understand. I do love him so much and and so proud of him, he tries so hard to do everything and I hope we can make his life happy.

[Peachy]

Welcome

there are some lovely aldies here with children with CP, and lots of us with other child dx's but a listening ear

You might wish to seek out Riven who had a HB resulting in a CP dx (I am pro HB as mine went well but know that it can be an issue for soem)

Guilt is normal after any dx though, and is something we have to work our way through as its essentially a pointless emotion.

and again, welcome X

[PheasantPlucker]

Hello, I have an 8 year old dd who has CP, born at 27 weeks of gestation.

I am just about to head out to a local SN fundraising evening, so cannot write much, but wanted to say welcome.

[MannyMoeAndJack]

Welcome to the SN boards! There are several posters who have lots of experience of cp so I'm sure you'll be benefiting from their collective wisdom very soon.

It's good that you've found out about your ds's difficulties so early in his life but I'm afraid you'll have to get used to using pester-power because very little help is actually offered. On the other hand, as your ds grows up, you'll meet some fantastic professionals who will get the best out of your ds

[4nomore]

Hi Badkitty! I just wanted to say please don't beat yourself up about opting for a home birth. I know lots of people whose labours have gone unaccountably wrong / been mismanaged in hospital, sometimes damaging their children, sometimes not - these things happen. Sounds like you made an informed assessment and did what you hoped would be for the best, you can't be sure that your choice even affected the outcome. Now you seem very on the ball in doing all you can for your DS - you're a good mum!

[Phoenix4725]

hi

nothing to add other than we all have days where the guilt and the iff onlys are bad

but there great bunch on here

[Saint2shoes]

hello and welcome to the sn board.
my dd is 14 and has cp, she was born in hospital. the guilt is normal imo. I worried that something I had done caused it. it was only once I saw a solicitor and my notes were looked at that my mind was put at rest.

[madwomanintheattic]

hi badkitty,

dd2 is 5 now and had a similar start. born at term (9lbs) and then spent 5 weeks in scbu (no gag/swallow reflex, needed ventilating etc, was ng fed and O2 dependent - mri shows damage consistent with birth hypoxia - no specific explanation, she did have the cord round her neck twice and shoulder dystocia inc broken clavicle, but neither have yet been agreed as contributing factors...)

dd2 has had physio etc since birth, (as well as slt and other stuff) and is now a whopping 5yo who attends mainstream school with some extra help. we have been told lots of things along the way (she won't talk and will rely on AAC, she won't walk etc etc)

however dd2 does walk, and talks, and eats a mostly ordinary diet with a couple of minor exceptions, and is on the yg&t list as she taught herself to read before school - she is hilarious.

it's so early to tell how your little man will be affected (which is one of the reasons that they don't like to dx too early) dd2 is a pt wc user, and she has a frame so that she is less likely to fall over in the playground when she is running (lol) but she trampolines, skis, goes to ballet and swimming lessons, and fights with her brother and sister...

no-one can tell how your wee man will develop, certainly there is a chance he will be more severely affected than dd2, but no-one can predict at this stage. i still suffer flashbacks to the birth (head crowning and the midwife saying the head was cool to the touch and 'crash the paeds') but generally the guilt and trauma lessens as time passes.

lots of people around with other experiences too, so whatever happens there will be a few of us that relate to your situation. the first year is without doubt the hardest, so be kind to yourself - i think i spent the whole time vacillating wildly between 'getting on with it' and bursting into tears at the doctors (again) because of her feeding problems...

there are also a lot of parents of kids with cp on special kids in the uk - not sure if you have found them yet.

[madmouse]

Hello!

Welcome

My ds is almost 15 months and also has cp, although he seems to be hemiplegic. physio works wonders, we are lucky his NHS(!) physio comes to our home every week to work with him and his own toys. Frustrating that you have to work so hard to get what you need.

I fully understand the guilt, it is something i am really struggling with and in fact was talking about with friends until late last night. They have said it seems to be something my body does in labour and now I feel I have been unable to keep him safe - mums and guilt sigh.

My ds is a real delight though and doing well. Not using his right arm much and preferring to stand on his left leg, but considering cruising as the next thing!

Happy to chat any time

[springlamb]

Hi my ds is 14 and has quad cp with left affected more than right). We had a crap delivery too and I suffered PTSD and lots of guilt problems - I knew there was something not right at 11am and I tried to leave and go to another hospital because I felt they weren't listening to me, I allowed myself to be talked into staying but he wasn't delivered for another 8 hours - bingo! You WILL need to deal with that guilt sooner or later, with professional help or not. But it's early days yet.
Professionals are reluctant to diagnose cp early. Ds was diagnosed at 10 months and we were told he would not walk, use a pen, drive a car, and might not speak.
He walks (in his own funny way), has lovely handwriting, he talks too much (and swears too much). And if his Mario Kart skills are anything to go by, he'll drive (in his own probably dangerous way!).
Take all the physio you can get, and try to get OT input to help his hand function as much as possible. Experience has shown that the TRUE key to independence is that hand function so it's really important.
Be kind to yourselves.

[anonandlikeit]

HI Badkitty
Welcome to the sn board, not soemwhere anyone wnats to be but everyone is so supportive & informative.
My ds2 has CP, Autism & learning difficulties. He was born at 28 wks after he stopped moving & was found to be in distress.
Guilt is hard, the waht if's etc but it does get easier.
Try to remember to enjoy your little boy for tthe beautiful baby that he is, Phyios, ot, Paeds etc have all told me the same, the best therapy is to treat them as normally as possible wiht plenty of play & stimulation.

My ds2 attends mainstream school with support, walks unaided, just uses a w/chair for distance. He is funny, stubborn & handsome.

Push for everything you need, make a nuisance of yourself ask for a referal to Portage, ask your HV about any local sn mother & baby groups. I found our local group to be a great source of knowledge & support.

But most importnatly don't forget to take care of yourself if you are well you cna do the best for your ds xxx

[badkitty]

Thanks everyone so much for your replies, makes me feel a lot less alone and also really nice to hear stories of hope to make me realise it is not the end of the world and that he still has a chance of a happy life. Off to bed now - have had a few glasses of wine with DH while letting it sink in but I think we actually both feel more positive now than have done for a while. Will go and give my troublesome little fellow a big kiss now

[twoisplenty]

Hi Badkitty. My ds is now 10yo with cp. He was born in hospital, and even though I know now that the bad delivery was not my fault, I have got over the guilt fairly recently.

If I see a newborn baby, complete with gushing mother telling proudly of the birth, I cannot cope. I have to walk away. I don't think that will ever change, seeing as my experience was 10 years ago!

BUT I have learned to accept things (except newborns!) and accept that my ds is different, and not to compare him to other his age.

Learning to accept takes lots of time, and everyone learns at their own pace. I'm afraid it's something that you will have to live with for a bit, but it does get easier.

My ds was diagnosed at 11 months, and I didn't know how he would "turn out" until much later.

Keep posting and talking, it helps a lot. (I don't post much, but read MN a lot!)

[Peachy]

twoisplentyrremind yourself when someone gushes over their NT baby that there are no guarantees; life can bring anything and that can include SN. DS3 was a textbook delivery, the ASD wasnt known abut until much later.

(I wouldnt post that on main board but its something i try and do when people eulogise over their well behaved 3 years old etc)

[twoisplenty]

Too true Peachy. Do you think that's more of a shock than knowing something was wrong at birth, and being warned to expect some problems with the baby? My friend's ds was absolutely fine until meningitis struck when he was 3yo, and now he is profoundly disabled. That must be devastating and take a lot of getting used to. At least I had time to prepare and was warned (although not obviously about the severity of the cp, that is still a shock tbh).

After my ds birth, I did go on to have a planned c section and a lovely newborn dd (now 5yo), and the hospital experience was fine, but even that lovely experience is forgotten when it comes to seeing a new baby. All the bad bits of my ds early life comes flooding back.

Thankfully I am a bit older now (unfortunately!) so my friends don't tend to have babies these days, I've done with most weddings and christenings etc. Although I am going to a wedding tonight....hmmm.

In fact I'm that old (!) that we have been invited to am 80's theme party (fancy dress). I'm strangely looking forward to it!!

ANyway, less rambling, I'll get some work done...

OMG I can really ramble when I feel like it, sorry!

[HelensMelons]

Just wanted to say welcome badkitty!

This is a very supportive board as well as being really informative.

Be kind to yourself as it's early days and it sounds like you are very traumatised by your ds's birth. Would counselling help to come to terms with everything?

Keep posting, sending a hug.

[BriocheDoree]

Hi Badkitty .
Welcome to the SN board.
Congratulations on your little boy. Hope that you can start to negotiate the system to getting him (and you) the help he needs.

[MuffinBaker]

I have only read your OP, badkitty, but I could feel the love you have for your child coming out of the screen. With you as a mum your DS will do just fine.

[badkitty]

Thank you all lovely ladies. Have been trying to do his physio for the first time today - he is not a fan of the stretches and it is so difficult to stop him arching his back all the time so we have had some screaming - hopefully he will get more used to it and at least it is easier to start when he is this little rather than in say a years time when he will be much stronger. Fortunately he loves tummy time and rolling over (we are having to try to teach him the proper way of doing it rather than arching and flinging himself over which he does at the moment) so that is at least one part of the regime which we get on ok with. Not sure what I am going to do when I go out with him - normally have to carry him in a bushbaby carrier as he won't stand being in the pram or car seat for any length of time, but I expect the carrier is probably not v good for him so will have to talk to the physio. So many more factors to consider now.

I am quite shocked at how many people seem to have had a similar experience to me with the birth hypoxia. I was obviously quite naive but I had no idea really that this could happen or that it could lead to CP - no-one ever really tells you about what can go wrong, I did NCT and read all the books and everything. I had another look at the homebirth leaflet which I got from the local NHS and it simply said something like "In the very rare event that the baby is not breathing when it is born, the midwives carry resus equipment. If this does not work the baby will be transferred to hospital" - doesn't really explain the consequences. Of course no-one wants to terrify pregnant women though!

My SIL is due to give birth any day now - going to be v difficult to cope with that I think, glad to know I am not alone or unnatural in my feelings re other people's babies though.

Must go and rescue DH from DS who appears to be in a screaming rage again...

[badkitty]

I have wondered whether counselling would help re the birth and coming to terms with everything, I am not sure. I am meeting our local regional person from Scope on Wednesday, I don't know if they offer any sort of counselling service maybe will ask about it.

[badkitty]

I am in SW London - I know what you mean, it could just be infuriating. Did you find it helpful?

[HelensMelons]

Badkitty, agree with Riven, I did find it helpful - my counsellor was fab - if you are interested go the British Association of Counsellors and Psychotherapists - www.bacp.co.uk and there will be a list of counsellors for the area that you live in. Wish you luck!

[PheasantPlucker]

BadKitty I had a couple of sessions at home with the Counsellor from the NNU dd1 was on, when she went home. It was very useful. I was overwhelmed with feelings of guilt.

(I am also in SW London)

[badkitty]

My relative positivity of the other night has faded - got really depressed yesterday seeing all the couples out with their prams and buggies in the sun. DS has been really screamy all weekend which doesn't help, I don't think he likes the physio very much and am worried that it is painful for him when we stretch him.

Does there come a time when you deal with the hurt and can feel happy again? At the moment that seems a very long way away.

Does anyone know of any chatboards for Dads of SN children? DH has been looking for something, I think he needs to talk to people as well, but all the boards seem to be mostly us mums.