Sudden Death in child

[kiddiwinks]

Hi i was wondering if anyone can help, i look after a 11 month old baby who's mom has sudden arrhythmia death syndrome and has been told that her 2 boys could have this also. They have to spend a day in hospital every 6 months doing loads of tests but said that the tests may not show everything up.
His mom only found out this condition last year as she sadly lost her mom to the condition( Mom was very healthy not very old and suddenly died on the way back from holiday with no warning at all) she now has a pacemaker fitted.


(Sudden Arrhythmia Death Syndrome is a disorder of the electrical system of the heart that can lead to the death of apparently healthy people without any warning. )

I would like to do a form for parent to sign saying that her child may have this condition just in case somthing does happen. Mom has said that if anything does happen it just happens there is nothing i can do but would like somthing to back me up.

[Bushpig]

Oh gosh yes, you do need to get it in writing that you are in no way held liable, and that you and the parents are BOTH aware this may be a problem and that tests are ongoing etc. (write everything you have both discussed re it to cover yourself) :( Very sad for them I hope they are clear!

[kiddiwinks]

I know both boys are very healthy. I know pre- school where his brother goes got mum to sign one.
I am really stuck how to word it. ( im rubbish putting things down on paper)

[Spangles]

I don't know if I would have something like that in writing for the parent to sign it just seems a bit insensitive - no offence meant.

If it was me I would just research the condition on the net, if there's a support group try and get some information/leaflets from there, read it and have it in the child's file. Maybe do a note sheet of main points that are of use to you - what you can do if something happens - signs - mother's advice, etc.

Strictly ensure I carry emergency information and charged mobile phone at all times.

Also ask the mum to make sure that you are kept up-to-date with findings from the tests.

That's what I would do off the top of my head.

I feel so bad for this family, it must be awful, like a ticking time bomb in some ways, must be a lot of pressure.


(I would assume that the mother has completed the child's information forms and that she's written it on there anyway?)

[Pedagog]

order a couple of family files from Early Support (http://www.earlysupport.org.uk/) Get mum to fill them in with all the relevant information,and ask her to keep them up to date.

Also word a policy especially for them something along the lines of I understand that as my family has the potentially fatal condition Sudden Arrhythmia Death Syndrome, I promise that I will keep all involved in my child's care up to date with all medical information and instructions relevant to my sons care, and where necessary arrange in coordination with his child cares training through our health care team.

Signed .................

Hope that helps.

[balloon]

This is just a thought and I'm probably wrong cos I'm so new to all this but I wondered if you should also tell your insurance company so you are covered? Perhaps somebody who is more experienced than I could advise?

[ajs]

sorry i can't help with the paper work but my hubby has a condition called hypertrophic cardiomyopathy, which is also known as sudden death syndrome, luckily for us he is only border line and also has palpatations which he takes meds for.

i really feel for the family how dreadful to live with this all of the time.