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recently found out my baby boy has spina bifida

LoupeetLoupeet Member Posts: 4 Listener
I have recently found out my baby boy has spina bifida just looking for support and advice really looking for new friends 

Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @Loupeet how are you doing today? Thank you for sharing this with us. 

    We have Navigate a national mentoring service that provides emotional support for parents of disabled children. They open Monday to Friday: 9am to 8pm and on Saturday: 9am to 12pm. You can call them on 0808 801 010 or you can email them: [email protected]  @Emma_Scope , @Beverley_Scope or @Matt_scope who can tell you more about their service.

    We also have parent connect a six-week support programme for parents and carers of young disabled people.

    If you have any questions, please let us know. We are all here to support you. :)
  • Beverley_ScopeBeverley_Scope Scope Navigate service Posts: 84 Pioneering
    Hi @Loupeet

    Welcome to the community.  This is a great place to get lots of support. 
    I am one of the parent advisors for Navigate which @Antonia_Scope mentioned above.   I am sure you must be going through a difficult time at the moment but the Navigate service would be able to give you personal support and hopefully guide you in the right direction for information and advice at a time that is suitable to you.

    In the mean time have you looked at the website https://www.shinecharity.org.uk/

    I hope we are able to help you in some way.

    Take care,
    Beverley

    Beverley Davies
    Parent Advisor
    Navigate
  • April2018momApril2018mom Posts: 2,869 Member
    Welcome to the community 

    My son has Spina Bifida (L1-2). He does not walk independently but he uses a wheelchair for public places and long distances as well. Please don’t hesitate to ask any other questions on here. 
  • LoupeetLoupeet Member Posts: 4 Listener
    Thanks for the responses I think I'm just over thinking and going through a lot of self blame I stopped smoking took folic acid but since I have got the diognos I've ended up smoking again and just being really down on myself I'm petrified atm and don't k ow what to do I love my baby and I'm keeping him but I need to stop smoking again and realise its not my fault I know he will be OK and he will have a way of life it will just take time x
  • Beverley_ScopeBeverley_Scope Scope Navigate service Posts: 84 Pioneering
    edited June 2019
    Hi @Loupeet

    Whatever you do you must not blame yourself.  You love your son and want what's best for him but you need time.  Have you thought about visiting your GP for a chat.  They may be able to put you on a list for counselling or even just talking to them may help.
    Please take care of yourself 
    Beverley
    Beverley Davies
    Parent Advisor
    Navigate
  • LoupeetLoupeet Member Posts: 4 Listener
    Hi I've spoke to my GP there not prepared to do anything as they don't know if the hospital will do that they don't want to step on any toes if that makes sense I have contacted my local children's center and I will be meeting with the neurological sergon a week tomorrow I think I'm still in shock I can feel him moving I've seen him on a 4d scan heard his heart beat too I just couldn't bear loosing him I have been offered a termination as its medical but I had a panic attack and said that scared me more so I am going to continue the pregnancy I know there's help I have contacted shine to xxx
  • Beverley_ScopeBeverley_Scope Scope Navigate service Posts: 84 Pioneering
    @Loupeet

    I'm glad to hear that things are happening for you and that you contacted shine.  Try not to think in the long term but take one day at a time.  I am sure you feel overwhelmed with it all but we are here to help and to listen.  Sometimes you just need to talk to someone to put your thoughts in order.

    As a team, Navigate is here for you to listen to you if that's all you want at the moment.  You may not be ready to talk but we are here if you do.  The number is 0808 801 0510 or you can apply directly through the Scope.

    As I said before, please take one day at a time and try to look after yourself too. 
    Beverley 
    Beverley Davies
    Parent Advisor
    Navigate
  • LoupeetLoupeet Member Posts: 4 Listener
  • Matt_ScopeMatt_Scope Scope Navigate service Posts: 56 Pioneering
    Hi, I just wanted to back up what has been said above, I also work for Navigate like Beverley and I also have Spina Bifida. I think at this point the best thing I can add is that firstly, its not your fault and although it will be hard at times and you will have many different thoughts and questions, there is a lot of support out there including from Shine, from ourselves in Navigate and within this online community as well as some of the wider spinal injury organisations.   Keep in touch with the boards and we will all help out where we can.  
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Loupeet, I just wondered how you were getting on?
    I hope the great advice and support has been useful :)
    Community Partner
    Scope

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  • pollyanna1052pollyanna1052 Member Posts: 2,002 Disability Gamechanger
    Loupeet said:
    Hi I've spoke to my GP there not prepared to do anything as they don't know if the hospital will do that they don't want to step on any toes if that makes sense I have contacted my local children's center and I will be meeting with the neurological sergon a week tomorrow I think I'm still in shock I can feel him moving I've seen him on a 4d scan heard his heart beat too I just couldn't bear loosing him I have been offered a termination as its medical but I had a panic attack and said that scared me more so I am going to continue the pregnancy I know there's help I have contacted shine to xxx
    Hi, I am sorry to hear of your son`s health problems. It must be so distressing.
    Your GP surgery will be able to help you with stopping smoking. Take care.
    xx
  • April2018momApril2018mom Posts: 2,869 Member
    How are you today, OP?

    I don’t believe folic aid prevents spina bifida anymore than I believe that vaccines cause autism. Please don’t believe everything you read online etc. For a long time I wondered if I had caused my son’s spina bifida because I only took FA once a week.
    I decided against termination eventually. Feel free to message me with further questions. I could literally write a neverending article or essay on folic aid and spina bifida. Three years ago I was sinking into quicksand and not knowing what to do next. I hope my story helps you. 
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