Reflex anoxic syndrome

Hello everyone I'm a newby. So here's my story, my 3 year old daughter has had this condition since she was 10 months old, has had many tests and most recently (November) had a Reveal device fitted where I have to literally scan her heart and it sends the recordings to the hospital.She has "episodes" almost daily and on Tuesday we were called to see our consultant as her heart "pauses" are lasting longer now so it now looks like she is going to need a pacemaker. She is going to need it done differently though as she is too small weight wise for the usual way, they will open up the lower half of her stirnam and fit the packing box in her abdomen and feed the wires to the heart from there. Obviously we are terrified and I'm just hoping to hear back from any parents or patients that have a similar story, many thanks for your time guys xx

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  • You can read patient stories on the STARS website, along with lots of information on RAS. stars.org.uk

    If you would like to talk to our patient advisors, please call 01789 867503 or email info@stars.org.uk

    Thanks

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