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Beth 23/06/1988 – 24/09/1988

Beth was diagnosed with trisomy 13 when she was 4 days old and we were asked if we wanted to leave her at the hospital since the condition was considered terminal. Beth lived for three months and we cared for her with no information or help. Tube feeding was not offered and we fed her two hourly as she could only take small amounts of milk. After she died I began a search for information that has not ended 23 years later.


The internet didn't exist when Beth was born, and the only written information was clinical texts detailing autopsy results from the 1960's. We were told trisomy 13 was so rare my consultant did not know of another family who had been affected by it.

 I hope people enjoy the new website and find it is friendly, informative and interactive. The booklets contain practical information gathered from many families both in the UK and the USA. My rainbow baby is now 22 years old, and although she never knew her sister Beth, she has grown up with SOFT and is now the newsletter editor.

SOFT Child


Condition: T13
Relationship: Mother