SOFT UK helps those affected by  trisomy 13, trisomy 18
(Patau's and Edwards' syndrome) and related disorders

'We discovered SOFT by searching the internet the day after returning from hospital and found their publications a great source of comfort. 
We contacted one of their 'befrienders' and speaking to someone who had lived through a similar experience gave us the strenght to carry on'. 

Parent who contacted SOFT UK

What is trisomy 13 /18 ?

Trisomy 13 was named Patau's syndrome after the doctor
who first described the extra chromosome in 1960. 

Trisomy 18 was named Edwards' syndrome after Dr John Edwards
for the same reason.

In trisomy 13 (Patau's syndrome) there are three
number 13 chromosomes in every cell instead of the normal
pair and in trisomy 18 (Edwards' syndrome) there are three
number 18 chromosomes in every cell instead of the normal pair.

The extra genetic material affects every stage of the
development of the baby, and these trisomies are the
most common chromosomal disorders after trisomy 21
(Down syndrome).

SOFT (UK) Supports Related Disorders

Lily's Story
Lewis' Story

Related disorders include partial trisomy, mosaicism, rings, translocation, deletion and holoprosencephaly.

The degree of the medical problems and disability can vary widely in children with a related disorder because the genetic material that is extra or missing will be different in every case. Some children may be profoundly handicapped, but many are much lesser affected, and several children with mosaicism or partial trisomy have entered mainstream education.

How rare are Patau’s or Edwards’ syndromes?

The following data has been reproduced with the kind permission of the National Down Syndrome Cytogenetic Register Annual Report 2007/8.

In 2007/8 around 88% of diagnoses were made prenatally.  The outcome of 24 Patau and 86 Edwards' syndrome prenatal diagnoses is unknown, but it is estimated that they include 1 Patau and 2 Edwards' syndrome live births.  Therefore in 2007/8 there were an estimated total of 29 live births of babies with Patau's syndrome and an estimated total of 59 live births of babies with Edwards' syndrome.

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.

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.

SOFT UK also distributes the SOFT USA Caring For a Child booklet. Although SOFT UK booklets are free to families who have been affected by one of these conditions, professionals and students are asked for a donation of £5 per information pack to cover print/postage costs.