Telencephalic Leukoencephalopathy

[nappyaddict]

has anyone else lost a baby to this? my friend has just got the pm results back and this is what her baby died of aged 1 month last november. she doesn't know anything about it and i wondered if anyone else knew anything?

[lulumama]

maybe someone at the hospital can help her, tell her more. she should maybe contact PALS,

very sad for her

[nappyaddict]

what is pals?

[lulumama]

patient liasion service, all hospitals have them..they can point her in the right direction for more info..also, she might want to contact SANDS...who support families who have lost a baby ...

[Marina]

Patient Advocacy and Liaison Service. They can be really helpful. Every hospital should have one.
The consultant who gave them the PM results should have been willing to explain what it is though.
I am really sorry their baby died

[Marina]

And as lulu says, SANDs have a register at head office so they can match Befrienders with bereaved parents whose baby died of the same condition, wherever possible.