Useful resources

You can briefly read up on what Thanatophoric Dysplasia at;



Genetics Home Reference

For personal stories of babies with Thanatophoric Dysplasia, and practical help we found the following really helpful;

Jamie Lynn – a story of sweet Jamie Lynn whose parents got some precious time with a beautiful, beautiful baby

Kolby’s Story- an amazing account where Kolby survived not just for hours but days

The Shaming of the Strong– I found this book amazingly helpful and read it in one day. It is from a faith perspective, but their decision, like us was focused on their child and rational, as opposed to being simply ‘blind faith’.

Angel Babies – This is a helpful leaflet for any parent going through a loss of their baby in a late stage of pregnancy or early infancy. It goes through getting a proper diagnosis, to birth, to saying goodbye and has some lovely ideas for the latter.

SANDS– (Stillbirth and Neonatal Death charity)- there’s lots of really helpful support and practical information on this website.

ARC– (Antenal Results and Choices)- practical support for making decisions after receiving a lethal or serious diagnosis during antenatal screening.

Aiden’s elephants– supporting bereaved parents in the UK. Support includes ideas for how to remember your baby.

Saying Goodbye– This is one strand of the Mariposa Trust who support parents through various stages of having lost a baby (other strands support parents going through a pregnancy after baby loss, or parents going through IVF after baby loss) by holding beautiful services at cathedrals across the UK. Just their social media pages and some contact I’ve had with them thus far has been such a great support.


Photo credit: netzanette via / CC BY-NC