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New to all this

Daisy2010 Member Posts: 7
Hi all,
My name is Hollie and I have a daughter Daisy who we have been told will have some form of cerebral palsy.

She was born 5 days over due date weighing 8 pounds but had a cord prolapse at birth and was born not breathing, She was transferred immediately to an out of town hospital to be put on a cool bed for 72 hours to help with any brain damage she might have suffered. She was very poorly initially and was put on phenobarbtone, after the 72 hours was up she was walmed slowly and was doing really well. 3 days later the ICU doctors felt she could be moved onto HDU as she was doing reaally well, that night she had what was thought to be a seisure/fit and stopped breathing, this was quite terrifying as at the time only myself and my husband was on that ward, there were no nurses around. She was resussitated and was ok, but the doctors didnt feel it was necessary to move her back onto ICU, both myself and my husband decided we would stay with her all night. About an hour later it happened again and then it was decided she would go back onto ICU. After a few days she was doing really well again and was moved back onto HDU, and a few days after that it was decided to transfer her back to our home town hospital. Our home town hospital where very much of the opinion that contact between parents and baby was the key to bringing them on. Which is what we did as we had missed out on so much from her being born, she came on in leaps and bounds, she was taken off the phenobarbatone and had no problems and after 5/6 days we was aloud to take her home.

She is doing really well at home and she has a physiotherapist come to see her once a month. She moves her arms and legs nicely and has good head control but on occasions has some head lag, im not sure if this is because of her age (5 months) or is something to do with her diagnosis. She does not yet sit on her own but will sit with light support, from around three months she had a tendancy to arch her back quite a lot, this has slowly gotten better but she still does it. We stated her on foods from 4 months and she has taken to it quite well, all though she does have a tendancy to stick her tongue out, i have been told this could be muscle tone and other sources have told me she is just tasting the food? The physio gave us a chair for us to sit her in to feed her which is supposed to encourage her to bring her arms forward. She will bang her toys hanging from her play gym and occaisionally she will grab them and hold onto them whilst lying on her back. She has rolled over once or twice but cant manage to pull her arms forward and get frustrated with herself. We tried her in her high chair a couple of times and but various toys in front of her to see if she would grab at them, but I think she somethimes has stiff arms, im not sure if this is normal at her age? If we pick her up under her arms and rest her feet on our laps she will walk towards us with a perfect ballerina style one foot in front of the other so Im hoping this is a good sign that her legs may be ok? Daisy is our first child and I suppose probably like you all im hoping for some small miracle, ive read stories of similiar things happening to children and them turning out fine and ive read stories that have gone the other way. Most of the time im generally up beat about the whole thing and want to give Daisy as much encouragement as I can but then I have days when I blame myself for what happened and I just want someone to tell me she will be ok. Im not looking for answers, it would be great to hear of any similiar stories. Sorry the story is so long!


  • drbrunel
    drbrunel Member Posts: 16 Connected

    What can I say...Through a different route...Myself and my wife are pretty in the same boat..I know that everyday is a constant worry in terms of what the future holds with regard to our little boy Theo

    He is now 6.5 months corrected and even though he had severe brain trauma at birth he is doing extremely well at this stage...well in fact pretty much everything your little one is doing.

    We were told our boy wouldnt sea, hear , eat blah blah blah...he has hit every milestone so far and Im confident he is one of the few who will walk away....Thats the faith I am keeping and wont accept anything a doctor tells me until I see if for myself

    keep the faith..babies are truly amazing in terms of their resilience!

    Oh and the other thing...There is no way a doctor can say your baby will have some form of cerebral palsy
  • renacahill
    renacahill Member Posts: 145
    Hi, congratulations on how well your little girl is doing. She appears to be doing well, though it is still too early to tell if there will be any problems later. It mostly takes till they're 2 before you see the final affects of the brain injury. Having helped look after my lovely grandson since his traumatic birth I have made some interesting observations on him and babies similar to him. I've noticed that they can sometimes get off to a slow start because the brain (I think) is recovering from the insult it had at birth (DGS also fitted and was resuscitated) but then come on in leaps and bounds. Did Daisy have an MRI scan and did it show any damage? With birth trauma the basal ganglia is the first thing to be affected, this controls movement co ordination. The amazing thing is that babies brains have neural plasticity which allows them to make new connections to work around the damaged areas. This obviously takes the baby longer to achieve some of the milestones but its because their brains are having to negotiate b roads instead of the faster moterways - but they get there in the end! I read that if children with CP can sit by the age of 2 then they are most likely to walk, so daisy is doing brilliantly. Get this book (I always recommend it as its excellent) Teaching motor skills to children with cerebral palsy, by siegelinde martin. It is available on amazon, and it will take you step by step up the development ladder. Good luck, stay positive, our first year was very traumatic, but you eventually get to a calmer place!

    Kate xx
  • Daisy2010
    Daisy2010 Member Posts: 7
    Thanks for your replies, its nice to know we are not on our own!

    Daisy did have an MRI scan and it showed she had damage in her left and right white matter, im not totally sure what that means.

    I will have a look at the book you mentioned it sounds like a good starting point for us to try.

    Thank you Hollie xx
  • hilsflynn
    hilsflynn Member Posts: 24
    Hi Daisy,
    Just wanted to say hi and tell you another positive son is 3 years old and I was told that if he survived his neonatal brain insult that it was likely he would be unable to do anything, the prognosis very slowly improved over his initial months but for a long time all the 'experts' were very negative (I don't think they like to give false hope and the brain is an amazing and very little understood organ) and to some degree they still are. Harry has just received his first walker - which even a few months ago we didn't necessarily expect to ever happen - and I still have hope that he will walk without support. He sat unsupported for the first time a few days before his 2nd birthday - but still needs supportive seating to maximise his hand function. His progress in all areas is slow but steady and I am confident that he will live independently.

    He started at a mainstream primary school (pre-school nursery) last september and is doing amazingly well. He is a very clever, happy and social boy. Be his mother is the hardest, but happiest experience of my life - every tiny bit of progress gives you such pleasure. Never give up, rely on your own instinct and really get to know what support you have available to you and use it.

    Best of luck.


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