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6 Month Old Baby with Cerebral Palsy.. How do you cope with new diagnoses'?

esthermb1996esthermb1996 Member Posts: 18 Courageous
Hiya, I'm a young mum (21) and gave birth to my daughter in January 2017 by emergency C-Section. She was recently diagnosed with cerebral palsy at just 6 months old and I wondered if anyone had any experiences or support groups they could mention that helped them cope? It's a hard pill to swallow, and I love my daughter til the death of me but I'd be lying if I said I didn't care. How did anyone manage? It's very upsetting news to me, even though we knew it was coming... any suggestions? Anyone been in a similar boat? If so, how did you manage?

Replies

  • andie50andie50 Member Posts: 2 Listener
    My grandson was born in an emergency section December 2015. We knew right away something was wrong, we've residency of him. At 3 months he took a seizure in my arms, blue lighted to hospital where we spent the next 6 weeks. He was diagnosed as blind, we were told we were over anxious, epilepsy, we were told we were over feeding him, cerebral palsy and cysts on his brain. Devastated isn't the word. But he needs us and from thatv1st day we promised him we would win this battle. I take him to playgroups, always for his age, as you want him to improve not stay the same. He goes to physio which we do everyday. We had to pureè his food, until at 14 months he was watching us eating and chewing and he now does the same. Keep your devastation hidden from her, push her gently towards things "she's not supposed to be doing", go with your gut feeling, she's your daughter you know her better than anyone, don't listen when you're told she can't, she can, at her own pace. Once his epilepsy was diagnosed and he was on medication, his sight in his left eye improved. His right eye he only had 20% vision and no pherriphel vision. 2 months ago, he now has 70% vision and his pherripheral vision has greatly improved. Apparently he's training his brain to work for him, he's sitting his head at an angle so he can see better. His speech isn't great but he knows who everyone is, when we're visiting he knows the house we're going to. Keep working with her and pushing her, with your support she'll come on in leaps and bounds. Believe it or not, this is the first time I've googled his symptoms, as I didn't want to know what he couldn't do, but I've now found answers to why he doesn't sleep all night, why he's sore for no obvious reason. I won't let him be labelled, he might not reach the 'set goals' but he will in his own time. Remember your daughter is unique and won't go with the trend, that's what makes her special, she's one of a kind and will show you what a fighter she is xxx
  • zoe123zoe123 Member Posts: 12 Listener
    Hiya,
    I can imagine what you are going through. Our baby girl had lack of oxygen during birth and was brought back to life. It was complete shock for us. We are still trying to cope. every single day is challenge. we are hoping she will get better. Our life is now just to help her as much as we can to achieve her goals. 

    you and your partner need to get strong for her. you never know what life brings for you. do your best and hope for the best. Enjoy her everyday, because we don't know what is going to happen next.

    you are welcome to message me if you are looking for someone to talk to.

    xx
  • JayPeeJayPee Member Posts: 13 Listener
    Can I suggest that you get help for you (and your partner). Consider counselling to manage your sadness and loss ( of what might and should/could  have been). Your age doesn't matter -it's hard at any age. You need to be strong inside and outside to deal with the battles ahead.If you are offered help - take it. Use the playgroups. Hassle the health visitors. Its early to know quite what effect CP will have on  their life yet. All little ones are different- with or without CP. Take each day at a time. Stay strong - you are the best Mum in the world for your little on. In fact just perfect.

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    edited September 2017
    Hi @andie50 and @esthermb1996 How are you getting on? I just wondered if you had seen our videos about parents of disabled children.








    Scope
    Senior online community officer
  • Abi222Abi222 Member Posts: 14 Connected
    Hi there,
    I read your post and was thrown back 25 year to the sad events that lead to my sons birth and Cerebral Palsy diagnosis.   How did i cope?  very badly...initially. I hope the following may be helpful.
    My son was born 9 weeks early and was a twin, we sadly lost his brother several week earlier in utero and I had to carry him unti I went into labour and gave birth to both sons one stillborn.
    My son was in the special baby unit for six weeks.   He progressed and we were allowed to take him home and we given an appointment for a "routine" brain scan at 6 months.  It was hard for me as I was torn between grieving for his brother and happy to have my other son home with me.
    He was a beautiful baby and I was an obsessive mother.  If a visitor had a cold they didn't get past the front doorstep and anyone allowed in had to wash their hands before touching  him. ( I can laugh about it now and can say i was sooo laid back with my following two girls totally different much more chilled)
    Our health visitor visited every couple of days at first then weekly.   She cooed over him and said nice things.
    At six months we had the scan and met with the Paediatric Consultant who said the scan showed "abnormal electrical activity in the left...............Spastic Cerebral Palsy have you any questions"!!!!!!!    I was stunned and shook my head I could not speak my mouth was dry my head was pounding and I shook from head to foot.  He suggested we schedule another appointment in a few weeks.
    I was with my mother as my husband had "work".We got a taxi home as she thought it unwise for me to drive.
    Shortly after we arrived home our health visitor appeared,  It was apparent by the look on her face she knew.   When i asked her she said she had an idea but it wasn't her place to make an assumption!!!   I hit the roof I had questioned several things comparing how he held himself when asleep and when awake and how clingy he was, needing rocked and soothed to sleep.  She said all babies were different!!!!
    She gave me no incline there may be something wrong. especially something so profound.  The nurses and doctors in special care had done the same!!!  i was livid and went ballistic. She insisted on calling my G.P.   (think she thought i`d lost the plot!)  but I refused and put her out.
    I didn't know exactly what spastic CP was but i definitely knew  i didn't like the term spastic ..and still don`t.  and wanted to know how my son would be effected so I contacted my G.P, who was lovely and put me in touch with the Cerebral Palsy Society (now SCOPE) and i learned about the huge range of minor to sever CP and associated problems.   
    We went back for another consultation with the consultant.  The future was painted very bleak,  key phrases , never walk, unlikely to reach mile stones, learning disability, communication problems, visually impaired and these are the ones I could remember.  I remember mentioning he had smiled and was told it was probably wind or a muscle spasm!!!!!   Home again completely desolate and inconsolable...again.  Then, (and  i don`t know why)  I  remember suddenly thinking this isnt helping my son he needs me i have lost one baby i will do everything I can to make his life as good as it can possibly be what ever it takes. And i them threw myself into anything and everything I could do to help him.    (Yes I was over the top...I still am today and he`s 25!!!)
    We were introduced to speech therapists, physio therapists, occupational therapists and he was given plans to follow which I did religiously with him...even through the night at nappy changes I massaged his legs and arms with oils.  (although this probably made me feel i was helping i`m not sure it actually did.. it probably didn't but it kept me focused!! 
    In time we came to realise his CP was quite profound affecting all 4 limbs, speech and language, learning ability and he progressed from a pram to a buggy then to a wheelchair. 
    Jumping forward in time...although he has never been able to walk, has partial use of his right hand, severely limited speech - he has a powered wheelchair  which he drives himself, calls me mum and can string sentences together that melts the heart. He is also a gaming console addict and loves the Wii and play station which he manages with one hand.   He can read simple words, has a wicked sense of humour and can swim on his back independently.  He also has an electronic communication aide which is wonderful....electronic voice or not the day he first said `mum love you` reduced me to tears..i talked about it for months!!!!! 
    He has a very full life and he has never known  life other than a one with  CP he copes admirably with life`s turbulence's and discomfort in his own way but  i feel he is happy and leads a fulfilling life...he get out and about more than me!!
    Another wonderful thing... and one in the eye for that Paediatric Consultant ...He has won awards for his SMILE! and is known for his wicked sense of humour.
    Don`t get me wrong it can be hard and he does have difficult to manage behaviour but that is probably due to other problems  and not simply Cerebral Palsy.
    I would just like you to know a  friend of mine had a little girl with mild CP and it affected just one arm and hand and that the scope of CP is variable.
    Enjoy your daughter and think positive thoughts.  There are lots of things available to make it possible for you to give your daughter all the help you can.  Remember CP isn't an exact science.  My sons future capabilities were way way off the mark when he was a baby and he did progress far more than I was led to believe.  
    I hope the above may help prove even when a picture is painted in bleak colours as ours was...every achievement your daughter makes will brighten the picture....and remember Consultants don`t have a crystal ball and cannot know for certain what the future will hold.
    She has the best start possible..she has you for her mother .
    Best wishes


  • esthermb1996esthermb1996 Member Posts: 18 Courageous
    Thank you everyone for your responses. Honestly my daughter is not even a year old yet but it’s been a roller coaster already. She is a beautiful happy baby and it definitely is warming to see other people share their experiences. Prior to the hospitals mistake I had no clue what cerebral palsy is, and honestly it’s been quite lonely not being able to relate to other parents who also have no clue. Thank you all so much 
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