Pregnancy and birth after a Preterm with CP

AnnieMalone
AnnieMalone Online Community Member Posts: 7 Listener
edited December 2021 in Cerebral Palsy Network
Hi, 
My name is Annie and I'm new to all this. My son (now 3)  was diagnosed with CP earlier this year and I am 30 weeks pregnant with my second child. Anyone else been in a similar situation and scared out of their wits? 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi @AnnieMalone and welcome to the community :) I myself have CP, I was born 25 weeks prem. My non disabled sister was only slightly early!

    Can you tell me what's concerning you most about things at the moment? Thanks for reaching out here, that's a really positive step.

    As Libby has said, do let us know if we can help.

    Alex
  • AnnieMalone
    AnnieMalone Online Community Member Posts: 7 Listener
    Hi @Alex_Scope. 
    I guess it's because I am 5 days off when I had my first son. I missed the signs of labour the first time round for several reasons. I'm not sure that I'd know anymore if I was in trouble this time round either.
    Therefore it's the guilt I feel around the whole situation even though logically I know I'm not to blame? 
    Annie
  • Richard_Scope
    Richard_Scope Posts: 3,739 Cerebral Palsy Network
    Hi, @AnnieMalone
    It can be a worrying time. I have CP too and I'm the oldest of 4, none of my siblings has CP. I really understand how you must be feeling. I had the same concerns when my daughter was born. Wondering whether she would have CP, like me. My worries were unfounded but it doesn't stop them.

    Talking about things really helps. 

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I can understand that @AnnieMalone. And what you mean about guilt, but please know that none of it is your fault :) My mum was convinced that running for the train a few days before I was born triggered it somehow (which likely isn't the case), and sometimes feels guilty. At first she was convinced I was just indigestion!  :D

    It's completely okay not to know when things are happening, and I'm sure you've got a plan in place to prepare for all eventualities, given what happened with your son. 

    Do you feel well supported just now? Have you been able to chat to your midwife about how you're feeling, and your plans for anything unexpected? 
  • AnnieMalone
    AnnieMalone Online Community Member Posts: 7 Listener
    I have spoken to them and they hear me but I don't feel like they really get it. It's not their fault, I guess.
    What's worse is I currently have Covid too so I guess I'm being extra paranoid. 

    My husband has really struggled with our sons diagnosis and it's affected his mental health. So I'm pretty lonely in all this too.
  • Richard_Scope
    Richard_Scope Posts: 3,739 Cerebral Palsy Network
    The diagnosis journey is really tough and accepting the diagnosis is hard. Feelings of guilt and grief are normal and common. It can also be lonely too.
    Has your husband managed to open up to you about his feelings? have you heard of Scope's Parents Connect or Navigate services? They are great for emotional and practical support. I can also recommend this book, 

    Day by Day by Jo Griffin

  • AnnieMalone
    AnnieMalone Online Community Member Posts: 7 Listener
    @Richard_Scope Navigate are who put me in touch with this forum and I am forever grateful. 
    We haven't looked at Parents Connect yet but i will. My husband doesn't have much to say with regards to his feelings. I'm hoping having our second son might help him open up some more 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    @AnnieMalone keep us updated with everything if you can, remember we're here to support you. It's difficult to talk about your feelings if you aren't used to it, or feel you can't for whatever reason.

    I hope your husband can get to a place where it feels easier to open up with you, and that Parent's Connect can help with supporting you in due course.
  • AnnieMalone
    AnnieMalone Online Community Member Posts: 7 Listener
    Thank you. We've recently moved area so we can get more support (family and medical) for my son, my self and my husband. Three weeks in and it's a good move so far. 
     
    Does anyone know how quickly new medical professionals pick up your case and how we chase them. My sons is due a new splint and has had a decline this week which concerns me. Do I call the GP and go from there? This is all still so new. 
  • Adrian_Scope
    Adrian_Scope Posts: 11,750 Online Community Programme Lead
    Hi @AnnieMalone. I'm sorry your son has had a decline this week. Your GP (or even the GP receptionist) should be able to chase or give you the contact details for the team that you'd need to contact. I know everywhere has huge wait times at the moment but you'd think they'd have at least made contact. 

    Definitely start with your GP and check they've aware that a new splint is due. 

    Moving can be stressful at any time of year, but while pregnant and just before Christmas sound especially tough. I'm glad it's going well so far! :)

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