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.

There are some dads on Special Kids in the UK. It is a lovely board.

YES you will feel happy again. You WILL reach a place that's you, dh and ds's place.

Try doing the physio after you've given ds a lovely warm bath. Put a sheepskin (real or fake, don't matter) down, put the lamps on, some nice music, have a cuppa tea nearby and talk to him throughout. And finish with a big cuddle on the floor.
I had some probs dealing with the birth of my sister's son three months after mine. I admit to having feelings of 'you bitch why is everything OK for you. We've worked hard and tried to do it all properly and it's all gone wrong'.
I put in an Oscar-winning performance to hide all that (was even present at her delivery) and I'm glad I did now. That sister is one of my biggest supports.
Be kind to yourselves. I am SW London too so if Croydon is at all convenient, and you'd like to meet for coffee or come along and meet ds, feel free. I also have a 7 year old dd who just loves babies (see, I even went on to have another...you might too)!

Hello
DD will be 11months next week, she was a HB asphyxia, 4weeks NNU. MRI showed CP dx as Spastic Quad and severe learning dif, seizures. Fed through NGT now has PEG though takes some oral.

We had physio,SALT,OT VT since the week she came home, they come to the house and are fab with her. She is doing ok, does have some control over movements, works very hard to do so.

We are going through a tough spell with seizures at the moment, but I look at all the things they have said and then look at her beautiful little face and think sod them she may not be a NT child but she IS perfect.

Just take each day at a time, dont expect to much from yourself, and dont be afraid to ask for help, I was, I thought I could do it all and I was soooo wrong!

Welcome to the SN group eveyone I have spoken to on here has been wonderful xxxx

Hi BadKitty I hope you might find this post even though it an old thread now. Basically we're going through the same experience / nightmare. Our daughter was born December, induced in hospital but suffered hypoxia at birth, and was in SCBU for 5 weeks. Its been a rollercoaster of emotions ever since - some good days and some depressing days. Thankfully we also have a 3 year old so we can't be depressed for too long!

I don't really have anything to make you feel better, in truth you've made me feel better just by reminding me that its not just us going through this. I just find it so hard because we don't know what she will be like in the future. Her legs seem ok (although i don't really know), but her arms have high muscle tone and she is very reluctant to use them. I see other babies grabbing out at toys, etc, and she is just not interested - that makes me feel so scared for the future as I know how important hand function is to their independence. She also moves differently, lots of neck arching esp when she is upset or tired. We try to be optimistic about what she will beable to do, but it is hard. We don't have a diagnosis yet which is just frustrating. Due to see specialists again next month, so hopefully get a better opinion then.

I feel constantly guilty that I am not stretching her limbs enough, not doing the physio exercises enough, etc, etc. Do you have a proper regime, we've just got vague instructions to do bits and pieces during play time, and stretching out when she sitting on my lap, etc. Im not convinced were achieving very much at all? Anyway sorry for rambling on, better sign off.

Hi Josey, PrincessPoppy - sorry haven't been on here for a while so don't know if you will see this but just wanted to say thank you to you both for posting - it does help to know other people are going through similar things at the same time. PrincessPoppy, your DD sounds very like my DS with what she does/doesn't do and I have the same fears. Re the physio, our hospital physio hasn't really given us much to do and is similarly vague - suggested a few things to do while playing (mostly which I was doing anyway) but no stretches or anything, although they have lent us a tumbleform chair to sit him in for feeding and stuff which is great. DS really enjoys the sessions with her though I think. However we started seeing a private phys when it was taking ages to get the hospital appointment, and he has given us a lot more actual exercises and stretches to do, although a lot of these are mainly for DS's neck rather than arms or legs - he has always looked almost exclusively to one side - this is getting a lot better with the physio. He also explained that all the arching is because he is using the extensor muscles in his back to do things as he is strong there, his trunk muscles are very weak and this makes it really hard for him to reach for things and bring his hands into the middle and stuff - maybe your DD is similar.

Josey I hope things are improving for you with the seizures - have they been able to control them with medication?

Hi, I havent been on on ages. How are things?

Re seizures pass I dont know, they seem to be better have another EEG next week.

She has started properly smiling though and trying to laugh. She will be 1 tomorrow so you can imagine my delight that she is finally grinning away.

I hope you are doing ok, when DD was 4/5 months I lost the plot got stuck in the thick of things. I was told that was a typical time scale. So look after yourself and be a little selfish.

xxxx

Hi everyone,sorry I have come to this post late.Wish I had read it earlier.My babys movements slowed and then stopped 20 years ago.I pushed my doubts to the back of my mind.I suffer from severe depression and was in a very difficult place at the time.I reported the problems later than I should have done.I must be the only sn mum in the world who has been told officially I am responsible for my dss severe disabilities.A letter was even sent to my dh pointing this out.
Please avoid all the smug parents of nt children who will use you to prop up their lives.Mumsnet has been a source of brilliant support,if only I had had this 20 years ago.
Our son is the Light of our Lives despite the 24 hour care he needs.We owe him so much.
Hugs and kisses.

Hi Josey, hope the big day went ok yesterday - am so pleased your DD is smiling I hope you got a few big miles yesterday! My DS also seems to have trouble smiling which I think in some ways I find the hardest thing to deal with. He does smile when you do something he finds funny (make a funny noise/tickle him) but certainly doesn't "smile in response to your smile" as they put it, or smile at people when they are smiling and talking to him - I hate it when we are out and people do this and then look confused when he doesn't respond in a 'normal' baby way with a big grin. It really worries me and I don't know if is common for babies with CP to be slow with this kind of thing or if it indicates something wrong other than the CP. He also laughed once a couple of months ago and has never done it since Other than that though he is doing ok at the moment generally although as he and my friend's babies become older the differences become a lot more obvious. I am having an ok day at the moment but also frequently have days where I fall so deep into despair that I don't know how I can carry on. I hate having to put on a smiling face for everyone and pretend I am coping when I feel like screaming. Also it is hard explaining to people - most people I see often know of course, but I got an email from a friend the other day who lives in Australia and am not in touch with v often, saying cheerily "So, how is motherhood treating you?" - really don't know how to respond to that.

DS is having a lovely snooze at the moment hence me going on a bit about myself sorry!

Jardy that is very sad I think its terrible that you were told you were responsible

Hi Riven, thank you - that is really helpful actually. DS is 6 months old. I had wondered whether his lack of response to facial expressions could be a visual thing - he definately only smiles at sounds or touch (he was also late with this, although they are starting to come a bit more easily now) - but thought I must be wrong as he clearly can see things. Had never heard of cortical visual impairment - I just thought it was a case of being either long-sighted or short-sighted - have done a bit of googling now anyway and sounds like that could be a possible explanation.

Anyway he is getting his vision checked next month as I asked the consultant about it last time we were there and got him to refer us (the consultant said he was sure there was nothing wrong with it - not sure how he could tell this having looked at DS for approximately 2 minutes but anyway). Hopefully one day he will also learn to smile properly and giggle etc like your DD - would make me so happy.

Hi Badkitty,
I'm late to this as not about so much these days. My DS will be 1 soon, and was born by emergency CS after a 3 day labour IN HOSPITAL. He was blue and floppy and not breathing, but recovered well. 2 days later our world almost ended when he (to cut a long story short) started fitting. Despite us being IN HOSPITAL and me ASKING NURSES for help as he wasn't feeding well. He was transferred to SCBU where he was found to have sevre hypoglycaemia. They couldn't stop the fits with 17 different drugs. They burnt out a few days later, but DS was by then, ventilated and, doctors presumed, brain dead. They told us that he would die. So, despite us apparently being in safe hands, it still all went tits up

I still blame myself . But much less so now than I did 6 months ago. I know that I could not have done any more, but I still feel guilty. I think it's normal.

An MRI scan at 5 days old showed that he had severe brain damage, in line with hypoglycaemia (he has almost total loss of upper hind area of brain) and would likely be epileptic and/or blind and his development was a complete unknown, but was likely to be tube fed. He left hospital at 4 weeks old awake, well and bottle fed.

At his 6 week review, we were told he was almost certainly blind, almost certain to develop epilepsy, would not be able to crawl, walk, smile or talk.

Fast forward to now. He has struggled through infantile spasms and has epilepsy which is, at the moment, under control. Though he has lots of random jerky/myoclonic movements. He first smiled at 7 weeks and has barely stopped since. No matter how crap I feel, a chuckle from the boy always cheers me up .
He definitely has a cortical visual impairment, but we, and his specialists, believe he can see, and can see quite a lot more than he seems to. He also has nystagmus (poor control of muscles moving the eyeball). we have had brilliant help in this area from Portage and the community eye doc (and Riven) who taught us lots to help stimulate his vision and the use of cues. DS also responds well to touch, but mostly sound. Anything that makes a swooshy noise always gets a laugh - his current favourite is a pair of cheap tinsel pom-poms coz he can grab at them too.

He is weight bearing, rolling over (but not back again). He has good head control (despite numerous setbacks due to drug treatment for the bloody infantile spasms) but his trunk is still weak, but improving.
He got his first pair of Piedro boots a couple of weeks ago (was very proud indeed) and the physio is bringing him a standing frame at her next visit.

He is very noisy vocal and has a variety of different sounds. Mostly happy sqeals and giggles, but lots of vowel sounds and a few consonants creeping in now too.

He has now real diagnosis or prognosis other than GDD, epilepsy and CVI, and we do not know what the future holds for him, but just to let you know, NOBODY knows what your DS will do. I never believed we'd have the baby we have now when he was 6 weeks old after the appointments from hell. Even at 6 months old. Honestly, even at 10 months old I had a different child. DS never ceases to amaze me and tries soooooo hard, the stubborn little mule. He also hates his physio exercises, but soon learned to endure the stretches and even start to enjoy them. His muscle tone has changed dramatically. Very high tone for first few months, complete loss of all muscle tone at 5-6months due to drug treatment - but it quickly returned and now he has mostly normal tone, tho the tone in his legs can increase very quickly, especially when excited! How much of this is down to his physio work, I couldn't say. I have been quite lax at times (especially recently as DS has been unwell) with his excercises, but have done his stretches religiously, every day. I like to think I have helped, but I suspect DS would have got there anyway

Good Luck x

Hi OP!

DS1 was born 9w early in hospital (also 3 w in SCBU) and we had absolutely all the hospital care possible, but he was still dx'ed with CP at 19 months (we knew as you did that there was something up from about 6w). You shouldn't blame yourself with the HB, I spent 2 years blaming myself for DS's early arrival (sex, working too hard etc) and at the end of the day you never really know why. I gave birth to our second DS 3 months ago at term after an uneventful pregnancy so why DS arrived when he did is a mystery.

I should point out DS1 is 3 now and although he doesn't talk, he is a giggly, loving boy with a wicked sense of humour. He just started walking and is wonderful. It feels so hard at the start and yes, you do have to push for stuff to happen but it does get easier.

Hi everyone,badkitty I could have written what you wrote myself.My son was exactly the same.I remember a psychologist saying to us,somethings you will always be disappoited at and others you will be thrilled at.You do adjust but it does take a long time.I am sorry that I wrote what I did earlier about myself been blamed because since then I feel everyone on here feels negative towards me.Any encouragement would be appreciated.I have never told anyone before and now I feel dreadful.Well I did tell one person and she looked at me as tho i was stupid.I was suffering from depression at the time.Still am,but hide it.Please?

OP, sorry for the hijack.

Jardy I wish I could go deck the doctor who told you that! As I said in my post, things just happen sometimes. DS1 was totally healthy on all scans, I suddenly went into labour at 31 weeks for no reason and he now has CP. Nothing seemed to be wrong with the labour or the pregnancy, but he still has it, and no one could have predicted or changed the outcome. I got depressed during both my pregnancies, and I have no doubt that you did the absolute best you were able to do in the circumstances.

Hi Bad Kitty,

My niece is 6 years old and has CP I am not sure of the specific terminology but she is wheelchair bound, has a feeding tube and can't talk. I saw her today and she is a loving happy child She has been in the local school but spent most of the day strapped in her chair without in my opinion the support she needs. She was getting leg spasms because of getting no exercise.

Soon she is going to a SN as her school have recognised they can't meet her needs and I think this will be good as stuff like swimming and sensory development for imobile kids will really benefit her.

My SIL takes her to the Bobath Centre in East Finchley, North London. You can really really see the difference in her after the sessions. I know when cost has been an issue they have been able to pay less if at all by getting physio when the Bobath are training staff:

www.bobath.org.uk/index.htm

My SIL had her at Watford General and hospital negligence lead to the hypoxia so please don't feel its down to your birth choices.

The support on MN has been great for our family and there are lots of people in this forum who know more about CP than I do... big hugs xxx

Hi Riven and laumiere,feel so much better,thank you very much.Ive never revealed that and so I felt very vunerable once I put it into words. If only mumsnet was going 20 years ago. Badkitty,your darling baby will bring you the sort of joy others can only imagine. It IS a journey tho.I have been on that journey for nearly 21 years now. I know everyone says take one day at a time,and you cant help it you do wonder about the future.I know I still do.
However my son goes to a Day Centre now and gets good respite in a lovely respite bungalow.There is a huge difference in attitude from services once your child becomes an adult.I found they worked with you much more and relationships were much more positive.Thanks again Riven and Lum,lovely words.Thinking of you Badkitty.

Oh Jardy I am so sorry that you were worried after your earlier post, how could anyone have negative feelings toward you for it I don't know, you sound like a wonderful loving mum. Of course you were not to blame for what happened, as if you hadn't had enough to deal with without being told that. Thank you so much for coming on here to try and help me.

Feelingbetter, sounds like your DS is doing amazingly well! Hope he gets on well with the standing frame. Can he sit up? My little one is so wobbly. I think I am starting to revise my expectations now and just try to appreciate anything he does manage to do - I would love him to at least be able to sit up one day but who knows.

Feeling v. proud at the moment - this afternoon the little chap managed to roll over in the way the physios want him to ALL BY HIMSELF (he was on the floor while I was having a wee - I was cheering from the loo - sorry if TMI!)

Oooooooo! Rolling over already! Well done your DS!
Mine has only very recently done the rolling over thing (just short of 11 months, the first time) and can't roll back. Cue lots of tears when the novelty wears off, bless him!

He had just started to have a good sitting posture at about 9 months, we could balance him, let go and he could stay there for only a few seconds before wobbling over, but he looked quite pleased with himself. Mind you, it could have been the fall backwards onto the bed and lots of tickling from us which he liked .
We were unable to work on that as bronchiolitis then pneumonia, then rotavirus hit him for six, and left us in and out of hospital for the last few months.
But, he is working very hard to get it back. Though he cannot sit unaided at all now, his posture when he is sat with us, with very little support is better than it ever was, so I hope its something he will achieve over the coming months. If he is able to stay well. Fingers crossed x

Hello everyone
Wow your babies are doing so well,it`s incredible.
My son sat up at 16 months after both arms were splinted to prevent him from flinging himself back.
Every tiny step was a thrill.Even now he makes developments.
Badkitty,your son is doing great
feelingbetter,so sorry your little boy has been poorly.
I would like to say that we know parents of children whose beloved children are profoundly disabled and have never been able to achieve ANY physical milestones.
However they still love their children deeply.I think little Ivan Cameron fitted into that category.
My son eventually achieved walking,running,can talk etc.
Although adorable,he i quite a handful as developmentally he is toddler stage but has the energy of a gazelle!

Yes Riven,I have been thinking of you.
My son received a diagnosis of profound disabilities,he had no sucking reflex etc etc.
My sister came to see him and when I told her about his prognosis,no hope at all of him achieving any milestones,she said that he would bring so many people so much pleasure and that would be his contribution to the world.I did meet Ivan Cameron and just as your little girl is adorable so was he.She is gorgeous and I am know she will bring joy.His parents did say that they felt sorry for themselves at first and then they realised how much he enriched their lives.
My son did achieve milestones but if you saw the horrendous black eye my dh is sporting,physical achievement is not everything,as explained by my son`s powerful right hook just because my dh tried to get him off the settee!!