Charity Number: 1002918
SOFT UK helps those affected by trisomy 13, trisomy 18
(Patau's and Edwards' syndrome)
and related disorders
-
after a prenatal diagnosis
-
caring for a baby or child
-
if a bereavement occurs
Prenatal diagnosis
After a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), we support you while you come to terms with the diagnosis, and after any decision you might make as to whether you choose to have a termination or decide to continue the pregnancy.
See 'Your Unborn Baby' Making a Decision
Babies with trisomy 13/18
If you are caring for a baby or child with trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), or if your baby or child did not live, Your Baby is a valuable source of information about chromosomal abnormalities and related disorders.
What does SOFT do?
We provide booklets about these syndromes, telephone support, links to others and shared experiences through newsletters and annual SOFT Days. Prenatal Diagnosis |
Some SOFT babies and children
SOFT UK publishes two helpful booklets
Your Unborn Baby and Your Baby can be read on our website, text only. Click on a booklet and choose a section from the index.
Explores the issues faced after a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), what is involved when a termination is chosen and how to plan when the pregnancy continues. |
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![]() Gives information about the birth of a child with trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes) and the early months of life, with sections on siblings, bereavement and a new pregnancy. |
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SOFT UK was founded in 1990 by Jenny Robbins and Christine Rose. In 1988 Jenny gave birth to a daughter Beth who had trisomy 13 and died aged three months. In the same year Christine had a son Jonathan who suffered from a partial form of trisomy 18 and lived until he was nineteen years old.
Medical Professionals |
| We welcome enquiries from doctors, nursing staff and students. SOFT booklets should be used as a basis for discussion between carers and their medical advisers. We do not recommend particular methods of treatment, and we advise parents that new treatments must never be introduced or existing treatments changed without consultation with their doctor or other medical professionals. |

Explores the issues faced after a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), what is involved when a termination is chosen and how to plan when the pregnancy continues.

