Our policy on tissue retention

FSID, along with other medical organisations, has long campaigned for routine retention of a defined set of tissues in all cases of sudden unexplained infant deaths, for diagnostic purposes only.

Parents should of course be informed that tissues were retained, and there should be no retention of tissues for research purposes without parental consent.

The main question asked by parents, is “Why? Why did my baby die?” and if small tissue samples were automatically retained it would allow for possible explanations of deaths when advances in medical science occur.

Retention of tissue would also be valuable in case another child should die in the family, to check for genetic disease. If tissues were available it could be helpful if confusion ever arose at some future time as to whether the death had been natural. 

We emphasise that we advocate tissue retention (not whole organs) only for diagnostic purposes, and with parents informed of what is happening; we strongly support the need to seek parent consent before using tissues for research.