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Baby could have cystic fibrosis

Discussion in 'Parenting' started by b15b2y, Feb 20, 2020.

  1. b15b2y

    b15b2y New commenter

    Good morning all
    I thought I might try reaching out to this community for any advice or support you may have.

    Our baby boy was born just over a week ago, and has had quite a turbulent start. we made it home for one night before being readmitted to hospital over concerns of no bowel movements.
    The next few days involved scans, running traces, a perforated bowel, emergency surgery on his bowel, a stoma bag attaching, a stay in PICU and a suggestion that the cause behind it all may be Cystic Fibrosis.

    I can’t really believe what both myself and my husband have survived the last week. I look back at pictures of us from the day he was born and want to break down crying...it hurts to think how blissfully unaware I was of what our futures potentially have in store.

    So we are still waiting confirmation of CF..our results are being fast tracked.
    The bowel op went well and though he is very drugged up and now looks teeny tiny, I'm hoping time will heal him.

    So we are now stuck with this potential diagnosis, and a million questions hanging over us.

    We also have a two year old who can’t understand why I’m not at home and I miss her so much.

    I’m spending alot of my time now considering our options for when I return to work and how we can manage financially as well as provide the best care for him. My work place has a one day emergency care policy for ill children, and then someone else is meant to step in for you. This clearly won’t be compatible with a child who may have spells of illness or hospital stays. I’m at the top of UPS and a middle manager, so loss of this income will have a considerable impact on us, though I’m already planning on contacting my union rep to see what we can do once the dust has settled a bit more..it’s not something I could tackle by myself.

    So what I’m really asking is for any support from parents in a similar position...I don’t know anyone with/carers of anyone with CF and would really welcome and contact with anyone who is. Or anyone who has faced a similar need to change jobs/ role and how you handled that.
    Many thanks for your time,
  2. Marshall

    Marshall Star commenter

    First of all - BIG HUGS!
    I can't help you with school matters but I would say you just need to enjoy your baby and become a mum at the moment. It will all sort itself out in ways that you might never have imagined.

    I have taught several children with CF over the years and they all had a huge family/friend network group - something that built up over time.

  3. frustum

    frustum Star commenter

    No experience or advice to offer, but best wishes in coping with this. I'm sure there must be some networks of parents in a similar position, so hopefully you'll be able to tap into those for advice and encouragement. If you have any offers of help and support, don't be proud, whether it's help at the moment, particularly with your older child, or further down the line.
  4. smurphy6

    smurphy6 Lead commenter

    No advice but just wanted to send you, your family and your beautiful new baby boy my very best wishes for the future.

    The future will look daunting and uncertain for you right now but I promise you that as time moves forward things will get sorted and organised for you and your new little love.

    I will keep you all in my thoughts. Enjoy your baby and rejoice he has made it through his bowel operation. God bless you all.
  5. Corvuscorax

    Corvuscorax Star commenter

    Just wait and see, I know that is easier said than done. I have fostered several children with CF. It varies hugely. In recent years it has become so much easier to manage, and certainly there is no comparison between the quality of life of children today, and my peers with CF when I was at school.

    Firstly, wit and see what the diagnosis is, secondly wait and see what the severity is.

    My last child with CF swam and played football, and I never knew her ill for a day. Of course, it is not always like that.

    Best wishes. xx
  6. sparklepig2002

    sparklepig2002 Star commenter

  7. b15b2y

    b15b2y New commenter

    Thank you for taking the time to reply. waiting for the results is agonising.
    It’s all so hard to process when he is sitting here now looking so healthy.. but I’m very aware from various reading that that is part of the condition... you wouldn’t necessarily know.

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