My son is 8 years old and due for his cardiac MRI and possibly cardic catheterization

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Hi my son was diagnosed with TF on my 20 week scan. He underwent the full repair at 4 months and has been very well since, in fact he is doing so well that he trains with Colchester football club and was recently scouted by Chelsea football club.

My son is 8 years old now and we had his yearly check up yesterday, which has left him and me worried, so just looking for some reassurance.

They said he would need his cardic MRI and a cardic catheterisation. I've had a Google up on what to expect but just wondered if this is just routine or if I should be prepared for the next op approaching.

My son is more terrified about the dye being inserted via a needle.

Really great full for any advice.

Thanks xxx

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  • Posted

    Hi Cheryl, the dye they use is quite normal and is used for many different things, not just heart diagnosis. I have to be truethfull and say that the only complications would be an allergy to the dye. This is rare but not unknown. I am certain they would have used it on his first round of surgery so probably no problems.

    You can assure your son that he won't know when the dye is put in it is not really different from the saline solution. The only bit he will feel is the needle. Which will probably be a canula ( can't spell) you know the thing in you arm or back of hand the use to administer drugs.

    It's great he or doing well with his football and that you are not wrapping him up on cotton wool.

    I don't live far from colchester myself so will hopefully read about him in the local papers.

    All the best and just to say that they are a great team of surgeons there. Just had to have apacemaker fitted. Nothing to do with TOF. Just me getting older!!!!!!!

    Kim

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    • Posted

      I can't help on the needle front as i have a total fear of them. I faint after all injections. Even the dentist. The fear of them is greater than the actual pain and Im so relieved once it's over and the fact it didn't hurt, i relax, blood pressure goes down followed by me!!!.

      I have even tried CBT which helped a little,

      Ok all the best and from one TOF kid to another, wish him well for me and yes you can tell him that is ok to be scared even 51 year old blokes are frightend of the needle.

      Kim

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  • 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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    • Posted

      Hi,

      So i dont really have any knowledge on brain development with TOF ( i am sorry), what we was told is that there maybe be a chance of 22Q11 which is a learning disability but they could only test this at birth. The test was done and all come back clear.

      Its allot to take in when your un born baby is diagnosed with anything and i seemed to be googling everything ( i still do now) what i do know is that my gut feeling lead me to strength and although it was the toughest thing i have ever been through i knew everything would be ok.

      Ask anything you want and il try to answer as best i can xxx

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