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Hi all, my wife and I have been reading this thread wit...

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Guest
Guest

Hi all,

my wife and I have been reading this thread with interest over the last day or two.

We are just at the start of our journey with this condition.

Our daughter, who was born on the 16th, has been diagnosed with Fallot's. We are over the initial shock. We are also over asking all the questions like, 'why is this happening to us?'

What is scaring us out of our wits now is the possibility of Tets Spells, also called Blue Spells or Hypoxic Spells.

Has anyone else had an experience of these? How did you identify them? When our daughter is having her nappy changed or is having her clothing changed she cries and goes blue. We were told to expect this, but is this classed as a Blue Spell?

[i:11d4e0efc5]This message was automatically imported from the original Patient Experience[/i:11d4e0efc5]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi all, My name is Heidi and I have posted on this site before , but would like to answer some questions that have been raised.Firstly to Jackie,My son Daniel was diagnosed at one week of age and we were told he would have a full repair done(hole patched ,aorta moved and pulmonary stenosis removed)at 12 months.If he was any younger and had a lot of tet spells they would do a shunt instead.He had many tet spells, he would go very blue and listless, lie floppy, shallow breathing in our arms. Daniel had reflux as well and this did not help as he would through up and then turn blue. He will get color back after surgery , will be a nice pink boy except in extreme cold. As for recovery time ,it depends on the child,Daniel was out of hospital in a week the first time.He had a second repair done for residual stenosis(happens in 5% of cases I,m told)at 3 and was out in 10 days . I think it takes about 6 weeks to get over it and they really bounce back better than us.

    [i:ef18d2e8ca]This message was automatically imported from the original Patient Experience[/i:ef18d2e8ca]

  • Guest
    Guest

    Posted

    Thanks so much for your reply. i cant wait to see my boy a nice pink colour. he is so pale and skinny and i often find that people stare at him and comment on the way he looks. it really upsets me. suppose reading some of the other comments, im lucky as he hasnt really had tet spells.

    hes had 2 shunts already but his sats are still very low. often in the 70's

    im dreading the operation but at the same time i just want it over and done with

    thanks again.ill let u know how the op goes

    [i:483b481987]This message was automatically imported from the original Patient Experience[/i:483b481987]

  • lulu
    lulu

    Posted

    Hi, I have been op at age 6. Nowdays you get the op much earlier. I can remember my blue spells and fainting. That first op was not even a full correction which was not available at that time. But that op made me pink again, and gave me life to continue and wait for the that a full correction was available. Your boy looks skinny so did I and even today I have a more fragile look compared to the other members of my family. But your kid will have his op sooner than I did and he'll gain his weight soon enough. I'm happy in my life, I know I won. Just a year or two longer was all I could go, and hear I am having a life a family, a child, work, friends and the internet to meet other people with tof. I have never met one face to face. Pearl
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