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My daughter was born with tetralogy of fallot, i know wh...

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Guest

My daughter was born with tetralogy of fallot, i know what to look for to keep her safe. but i would really like to know what i'am in for. what the surgery is going to be like and what will she be like after. i have never met anyone who has had a child with this condidtion. everything that iam being told is leading me to believe that i wont have my baby for much longer, even if she dose keep on fighting she will never have a normal life or at least as normal as it can be.

[i:c8f32f1ec4]This message was automatically imported from the original Patient Experience[/i:c8f32f1ec4]

0 likes, 21 replies

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  • Slover16
    Slover16 Guest

    Posted

    I was born with T of F. I am now 30 years old. I had surgery when I was 9 months old to repair two holes in my heart. Reason for waiting for so long to do the surgery is because I had pneumonia do they had to wait for me to get over that first. I had another heart surgery in 2014 to place a recorder in to record what my heart was doing because I was experiencing "Tet" spells. It is now almost 2017 and I am doing great. No major issues. Tomorrow (11-15-2016) I meet a cardiologist that specializes in T of F aND in hopes they give me good news to remove the recorder and tell me that I am able to start a family.

  • cathryn00223
    cathryn00223 Guest

    Posted

    my daughter was born with fallots tetralogy it was picked up at my 20 week scan and although it seem a really scarey time there was plenty of help and advise from all the doctors, consultants and healthcare professionals. She had the repair operation at 6 months and is now 17 years old.  I have 3 other children and she is no different to them in what she can do so dont worry about your daughter she will be fine. 
    • DerickaC90
      DerickaC90 cathryn00223

      Posted

      This gave me hope . I too found out at 20 weeks utero and verified 24 weeks utero that my baby had this condition. And I know everyone's condition is different but this truly made me happy. As I have been stressed out and crying a lot.

  • malcolms
    malcolms Guest

    Posted

    Hi

    My son was born with it..He has had all the operations at each stage of development.

    He is now a great big strapping 19 year old and is taller than me.

    I can also tell you about a famous football legend who has a son woth TOF who I reckon now must be about 16.

    Look me up on Facebook I will show you him, the road ahead is doable. It is only natural to be scared but don't suffer, let me help you.

  • jackieisawinner
    jackieisawinner Guest

    Posted

    Hi I had a tof when I was 9 years old and apart from yearly check ups at first (  I have not had one for about 5 years now.) I have lived a normal life including having two children and I am now the Grandma to 5.  I am now 53 yrs young and I live my life to the full ( altho a little slower these days ) So dont give up hope 
  • dirk.bass
    dirk.bass Guest

    Posted

    Just learning about TOF.  my son (in utero) was recently diagnosed with ToF and is showing delayed brain development.  Is this normal?  We are trying to anticipate any types of disabilities that are involved with CHD and would like some input.  Any info would be great!  

    For reference, our ultrasound scans are putting him at 12-14 days behind developmentally and we are currently at 22 weeks.  

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