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Told Baby has Absent Pulmonary Valve with Tof

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James7362
James7362

Me and my Wife have just had confirmed on her 19 weeks scan that the Baby has Tof with absent pulmonary Valve and would like some advise from any one else woith or know anything about it please.

0 likes, 3 replies

3 Replies

  • chantelle525981
    chantelle525981 James7362

    Posted

    Hi are you from the UK?

    If so and if you are on facebooo join The Somerville Foundation group. Its a group mainly for adults with heart conditions to talk about their condition and meet others with the same or differant conditions. I know for sure there are people in that group with this condition, might be helpful to talk to one of them.

    If your not in the UK i'm sure there will be similar Facebook groups either for adults of specifically parents with your babies condition.

    I know facebook isnt really proffessional but ir reallycan help to chat to others. I have a CHD called Shones Syndrome and i chat to others in this group which i find really helps me.

    Good luck on your CHD journey x

  • James7362
    James7362

    Posted

    Ok thanks i am from uk and yes will p[ost message on that site, thanks.

     

    • chantelle525981
      chantelle525981 James7362

      Posted

      There is also a group called TOF UK om facebook and i am told there is a parent with a childwith Absent Pulmonary valve with TOF on there so that might be good too
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