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ICDs in kids based only on septum size ?? NOw or wait

I'm curious about your thoughts in ICDS in kids--my daughter, age 7, has recently been diagnosed with HCM and has an "impressive" septum size of 4 cm, but other than that no symptoms--was caught on a well-child check with a strange murmur---ends up dad has it too, about a 2 cm septum and no symptoms--he's 47 and has always been athletic--can't find anyone else yet with it.

So we're trying to decide.....ICD now, as recommended by some, or try to wait until she is bigger due to complications in implantation at such a young age (she's really too small to use the veins yet--although she's tall for her age she's of average weight...

What do you think? What else should we consider?

1 Responses
Avatar universal
An ICD is a device that could save your daughters life.  I dont know the details of her condition, but if they are suggesting an ICD i assume its because they feel that she is at risk of having a dangerous heart rythmn that she might need to be shocked out of.

A lot of small children have pacemakers and ICDs for verying congenital conditions, maybe you should checkout some congenital heart disease websites so you can ask other parents how their child has fared with an ICD.

The main thing that you need to weigh up, and get on advice from her doctor are the risks of the operation, and what might happen to her if she doesnt have the procedure.

If it is really urgent and her veins really are too small to use (such as if she is a small baby) they sometimes open the chest for the first implantation, this obviously changes the type of surgery that she would be having.  Ordinarily pacemakers and ICDs are implanted through a cardiac catheterisation, which is a reletively minor operation.  I have had several such operations throughout my childhood and teenage years, although for different reasons than placing an icd.
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